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Self-Care Independence and Readiness to Transfer from Pediatric to Adult Health Care in Cystic Fibrosis

Permanent Link: http://ufdc.ufl.edu/UFE0021123/00001

Material Information

Title: Self-Care Independence and Readiness to Transfer from Pediatric to Adult Health Care in Cystic Fibrosis
Physical Description: 1 online resource (89 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: cystic, fibrosis, pediatric, transfer, transition
Clinical and Health Psychology -- Dissertations, Academic -- UF
Genre: Psychology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: As patients with cystic fibrosis (CF) are living longer, transferring from pediatric to adult health care is becoming an increasingly prominent issue. Despite the availability of an adult provider, approximately 25% of adults with CF receive care from a pediatrician. Across studies, no standard practices as to when and how to transfer patients from pediatric to adult health care were found. The current study seeks to adapt a patient self-report measure of self-care independence, and to measure potential correlates of self-care independence in patients with CF. In addition, this study seeks to assess the relationship between proposed psychosocial variables, self-care independence, and readiness to transfer. Participants were recruited from four CF centers across the Eastern United States. Pediatric (n = 50) and adult (n = 10) patients with CF participated in this study. Pediatric patients completed self-report measures of self-care independence, executive functions, and CF knowledge. Parents of pediatric patients completed psychosocial measures, including a demographic questionnaire, family functioning questionnaire, parental distress measure, and self-care independence scale. Patients, parents, physicians, nurses, and social workers rated the readiness of their patient to transfer to adult care. Psychometric properties of the adapted self-care independence scale ranged: strong internal consistency, adequate test-retest reliability, and weak concurrent validity with CF knowledge. The self-care independence scale failed to discriminate between pediatric and adult patients. The measure showed good agreement between parents and pediatric patients. The psychosocial variables were not related to self-care independence, contrary to the hypothesis. Age and health status were statistically significant correlates of the physician?s rating of readiness to transfer, with the model accounting for 60% of the variance. Self-care independence did not contribute to the physician?s rating of readiness. Results were similar for the ratings by nurses and social workers. Exploratory analyses suggested that family functioning and CF knowledge accounted for variance in nurse ratings of readiness, above and beyond age and health status. Overall, mixed results regarding the psychometric properties of the self-report of self-care independence scale were found. Older age and better health was related to greater readiness to transfer by the medical team. In addition, worse family functioning and more CF knowledge were related to nurse ratings of readiness. Small sample size limits the options for statistical analyses and the cross-sectional design prevents evaluation of causality. Future longitudinal studies should investigate the role of age, health status, knowledge, and interventions in predicting successful transition to adult care. In other research, successful transition has been operationalized as a single visit to the adult clinic. Other issues, like satisfaction, make be incorporated into defining successful transition. To the author?s knowledge, this is the first study to empirically examine correlates of the CF team?s ratings of a patient?s readiness to transfer to adult care. Future research should explore variables which are important to patient and parent ratings of readiness.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Janicke, David M.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-05-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0021123:00001

Permanent Link: http://ufdc.ufl.edu/UFE0021123/00001

Material Information

Title: Self-Care Independence and Readiness to Transfer from Pediatric to Adult Health Care in Cystic Fibrosis
Physical Description: 1 online resource (89 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: cystic, fibrosis, pediatric, transfer, transition
Clinical and Health Psychology -- Dissertations, Academic -- UF
Genre: Psychology thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: As patients with cystic fibrosis (CF) are living longer, transferring from pediatric to adult health care is becoming an increasingly prominent issue. Despite the availability of an adult provider, approximately 25% of adults with CF receive care from a pediatrician. Across studies, no standard practices as to when and how to transfer patients from pediatric to adult health care were found. The current study seeks to adapt a patient self-report measure of self-care independence, and to measure potential correlates of self-care independence in patients with CF. In addition, this study seeks to assess the relationship between proposed psychosocial variables, self-care independence, and readiness to transfer. Participants were recruited from four CF centers across the Eastern United States. Pediatric (n = 50) and adult (n = 10) patients with CF participated in this study. Pediatric patients completed self-report measures of self-care independence, executive functions, and CF knowledge. Parents of pediatric patients completed psychosocial measures, including a demographic questionnaire, family functioning questionnaire, parental distress measure, and self-care independence scale. Patients, parents, physicians, nurses, and social workers rated the readiness of their patient to transfer to adult care. Psychometric properties of the adapted self-care independence scale ranged: strong internal consistency, adequate test-retest reliability, and weak concurrent validity with CF knowledge. The self-care independence scale failed to discriminate between pediatric and adult patients. The measure showed good agreement between parents and pediatric patients. The psychosocial variables were not related to self-care independence, contrary to the hypothesis. Age and health status were statistically significant correlates of the physician?s rating of readiness to transfer, with the model accounting for 60% of the variance. Self-care independence did not contribute to the physician?s rating of readiness. Results were similar for the ratings by nurses and social workers. Exploratory analyses suggested that family functioning and CF knowledge accounted for variance in nurse ratings of readiness, above and beyond age and health status. Overall, mixed results regarding the psychometric properties of the self-report of self-care independence scale were found. Older age and better health was related to greater readiness to transfer by the medical team. In addition, worse family functioning and more CF knowledge were related to nurse ratings of readiness. Small sample size limits the options for statistical analyses and the cross-sectional design prevents evaluation of causality. Future longitudinal studies should investigate the role of age, health status, knowledge, and interventions in predicting successful transition to adult care. In other research, successful transition has been operationalized as a single visit to the adult clinic. Other issues, like satisfaction, make be incorporated into defining successful transition. To the author?s knowledge, this is the first study to empirically examine correlates of the CF team?s ratings of a patient?s readiness to transfer to adult care. Future research should explore variables which are important to patient and parent ratings of readiness.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Janicke, David M.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-05-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0021123:00001


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1 SELF-CARE INDEPENDENCE AND READINESS TO TRANSFER FROM PEDIATRIC TO ADULT HEALTH CARE IN CYSTIC FIBROSIS By KRISTEN K. MARCIEL A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2008

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2 2008 Kristen K. Marciel

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3 To adolescents with cystic fibrosis and to my mother for her support

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4 ACKNOWLEDGMENTS The patien ts, their families, CF centers, a nd collaborators are ac knowledged for their contributions to this project.

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5 TABLE OF CONTENTS page ACKNOWLEDGMENTS...............................................................................................................4 LIST OF TABLES................................................................................................................. ..........8 ABSTRACT.....................................................................................................................................9 CHAP TER 1 INTRODUCTION..................................................................................................................11 Pediatric Chronic Illness.........................................................................................................11 Cystic Fibrosis........................................................................................................................12 The Changing Epidemiology of Cystic Fibrosis.................................................................... 15 Transfer and Transition in Health Care..................................................................................17 Transfer and Transition in CF................................................................................................. 18 Barriers to Transition....................................................................................................... 20 Guidelines for Transition in CF.......................................................................................21 Self-Care Independence................................................................................................... 22 Correlates of Self-Care Independe nce and Readiness to Transfer .........................................24 Executive Functions........................................................................................................ 25 Family Factors.................................................................................................................25 Parental Distress.............................................................................................................. 26 Specific Aims and Hypotheses............................................................................................... 27 2 METHODS.............................................................................................................................29 Participants.............................................................................................................................29 Inclusion/Exclusion Criteria............................................................................................ 29 Procedure................................................................................................................................30 Institutional Review Board Approval.............................................................................. 30 Recruitment.................................................................................................................... .30 Survey Administration..................................................................................................... 31 Adaptation and Validation of the Self-C are Independence Scale-Self Report ....................... 31 Adaptation of the Patient-Report Self-Care Independence Measure .............................. 31 Internal Consistency........................................................................................................32 Test-Retest Reliability..................................................................................................... 32 Concurrent Validity......................................................................................................... 32 Discriminative Validity................................................................................................... 32 Measures.................................................................................................................................33 Demographic Questionnaire............................................................................................ 33 Behavior Rating Inventory of Executive Function ..........................................................33 Family Assessment Device.............................................................................................. 34 Brief Symptom Inventory................................................................................................34 Self-Care Independence Scale......................................................................................... 35

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6 Self-Care Independence Scale-Self Report .....................................................................35 CF Knowledge Questionnaire.........................................................................................36 Rating of Readiness to Transfer...................................................................................... 36 Pulmonary Function Tests............................................................................................... 36 Power Analyses......................................................................................................................37 Statistical Analyses........................................................................................................... ......37 3 RESULTS...............................................................................................................................40 Demographics.........................................................................................................................40 Pediatric Clinic Patients.................................................................................................. 40 Adult Clinic Patients........................................................................................................40 Means and Descriptive Informati on from Questionnaire Measures....................................... 41 Self-Care Independence Scale-Self-Report .....................................................................41 Knowledge.......................................................................................................................41 Behavior Rating Inventory of Executive Function ..........................................................41 Brief Symptom Inventory................................................................................................42 Family Assessment Device.............................................................................................. 42 Validation of the SCIS-SR......................................................................................................42 Internal Consistency........................................................................................................42 Stability...................................................................................................................... ......42 Concurrent Validity......................................................................................................... 43 Discriminative Validity................................................................................................... 43 Relationship between Parent and Patien t Report of Self-Care Independence ........................ 43 Relationship between Psychosocial Variables and Self-Care Independence ......................... 44 Relationship between Self-Care Indepe ndence and Readiness to Transfer ............................ 45 Medical Teams Average Rating..................................................................................... 46 Physician Rating.............................................................................................................. 47 Nurse Rating....................................................................................................................47 Social Worker Rating......................................................................................................48 Self-care Independence as a Mediator.................................................................................... 49 Exploratory Analyses........................................................................................................... ...49 Readiness to Transfer...................................................................................................... 49 Knowledge.......................................................................................................................50 Knowledge and Nurse Rating of Readiness to Transfer................................................. 50 Psychosocial Variables.................................................................................................... 51 Psychosocial Variables and Nurse Rating of Readiness to T ransfer............................... 51 4 DISCUSSION.........................................................................................................................61 Psychometric Properties of SCIS-SR..................................................................................... 61 Patient and Parent Reports of Self-Care Independence ..........................................................67 Psychosocial Variables and Self-Care Independence.............................................................67 Self-Care Independence and Ratings of Readiness to Transfer .............................................. 68 Limitations.................................................................................................................... ..........74 Strengths...................................................................................................................... ...........75 Future Directions....................................................................................................................75

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7 APPENDIX A SELF-CARE INDEPENDENCE SC ALE-SELF REPORT FORM ....................................... 78 B RATING OF READINESS TO TRANSFER........................................................................ 80 LIST OF REFERENCES...............................................................................................................81 BIOGRAPHICAL SKETCH.........................................................................................................89

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8 LIST OF TABLES Table page 3-1 Demographic characteristics of pediatric patients............................................................. 53 3-2 Demographic characteristics of parents of pediatric patients ............................................ 54 3-3 Demographic characteristics of adult patients ( n = 10) ..................................................... 54 3-4 Means and standard deviations.......................................................................................... 55 3-5 Regression of executive functions predicti ng patient-report of self-care independence ... 55 3-6 Regression of family fu nctioning predicting patient-repor t of self-care independence .... 55 3-7 Regression of parental distress predicting patient-report of self-care independence ........ 56 3-8 Regression of executive functions predicti ng parent-report of self-care independence .... 56 3-9 Regression of family fu nctioning predicting parent-repor t of self-care independence ..... 56 3-10 Regression of parental distress predicting parent-report of self-care independence .........56 3-11 Regression of patient-repor ted self-care independence predicting the team s rating........ 57 3-12 Regression of parent-re ported self-care independence pr edicting the team s rating......... 57 3-13 Regression of patient-re ported self-care independence predicting physician rating .........57 3-14 Regression of parent-reported self-c are independence predicting physician rating .......... 57 3-15 Regression of patient-re ported self-care independence predicting nurse rating ................ 58 3-16 Regression of parent-reported self-c are independence predicting nurse rating ................. 58 3-17 Regression of patient-repor ted self-care ind ependence pred icting social worker rating... 58 3-18 Regression of parent-repor ted self-care independence pred icting social w orker rating.... 58 3-19 Pearsons r correlation m atrix of ratings of readiness to transfer......................................59 3-20 Top ranked reasons for rati ngs of readiness to transfer ..................................................... 59 3-21 Regression of knowledge predicting nurse rating .............................................................. 59 3-22 Pearson correlations between psychosocial variables and ratings .....................................59 3-23 Regression of family func tioning predicting nurse rating ................................................. 60

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9 Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy SELF-CARE INDEPENDENCE AND READINESS TO TRANSFER FROM PEDIATRIC TO ADULT HEALTH CARE IN CYSTIC FIBROSIS By Kristen K. Marciel May 2008 Chair: David M. Janicke Major: Clinical Psychology As patients with cystic fibrosis (CF) are living longer, transf erring from pediatric to adult health care is becoming an increasingly prominent issue. Despite the availability of an adult provider, approximately 25% of adults with CF receive care from a pediatrician. Across studies, no standard practices as to when and how to transfer patients from pediatric to adult health care were found. The current study seeks to adapt a patient self-report measure of self-care independence, and to measure poten tial correlates of self-care inde pendence in patients with CF. In addition, this study seeks to assess the relati onship between proposed psychosocial variables, self-care independence, and readiness to transfer. Participants were recruited from four CF centers across the Eastern United States. Pediatric (n = 50) and adult ( n = 10) patients with CF particip ated in this study. Pediatric patients completed self-report measures of self-c are independence, executive functions, and CF knowledge. Parents of pediatric patients co mpleted psychosocial measures, including a demographic questionnaire, family functioning questi onnaire, parental distress measure, and selfcare independence scale. Patient s, parents, physicians, nurses, and social workers rated the readiness of their patient to transfer to adult care.

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10 Psychometric properties of the adapted self-car e independence scale ra nged: strong internal consistency, adequate test-retes t reliability, and weak concurre nt validity with CF knowledge. The self-care independence scale failed to discrimi nate between pediatric and adult patients. The measure showed good agreement between parents and pediatric patients. The psychosocial variables were not related to self -care independence, contrary to the hypothesis. Age and health status were statistically signifi cant correlates of the physicians rating of re adiness to transfer, with the model accounting for 60% of the variance. Self-care i ndependence did not contribute to the physicians rating of readine ss. Results were similar for the ratings by nurses and social workers. Exploratory analyses suggested th at family functioning and CF knowledge accounted for variance in nurse ratings of readiness, above and beyond age and health status. Overall, mixed results regarding the psychomet ric properties of the se lf-report of self-care independence scale were found. Older age and bette r health was related to greater readiness to transfer by the medical team. In addition, wo rse family functioning and more CF knowledge were related to nurse ratings of readiness. Sm all sample size limits the options for statistical analyses and the cross-sectional design prevents evaluation of causalit y. Future longitudinal studies should investigate the role of age, health status, knowledge, and interventions in predicting successful transition to adult care. In other researc h, successful transition has been operationalized as a single visit to the adult clinic. Other i ssues, like satisfaction, make be incorporated into defining successf ul transition. To the authors knowledge, this is the first study to empirically examine correlates of the CF teams ratings of a patients readiness to transfer to adult care. Future research should explore vari ables which are important to patient and parent ratings of readiness.

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11 CHAPTER 1 INTRODUCTION Pediatric Chronic Illness Pediatric ch ronic illness affects more than one million children in the United States (Wallander, Thompson, & Alriksson-Schmidt, 2003). Newacheck & Taylor (1992) estimate up to 31% of children have a chronic illness, with 34% of children with a chronic illness experiencing moderate to severe disease and impairment. These children experience a number of functional limitations that effect their self-care behaviors, education, and social interactions on a daily basis. Children with chronic health conditio ns and their families are also at increased risk for a number of psychosocial problems including poor adjustment, increased internalizing and externalizing disorders, low self-esteem, a nd less than optimal family functioning (Cadman, Boyle, Szatmari, & Offord, 1987; Cadman, Rosenbaum, Boyle, & Offord, 1991; Gortmaker, Walker, Weitzman, & Sobol, 1990; Williams et al ., 1999). Some studies report improvements in adjustment over the lifespan, while other studies suggested poor adjustment to chronic disease (e.g., Northam, Anderson, Adler, Werther, & Warn e, 1996; Noll et al., 1997) Most significant and troubling is that children w ith chronic health conditions ha ve a reduced life expectancy, which varies based on the sp ecific health condition. Historically, a number of pediat ric chronic health conditions we re associated with reduced life expectancy. Fortunately, medical advances have improved life expectancy, with 90% of children with a chronic health condition surviving into adu lthood (Hagood, Lenker, & Thrasher, 2005; Wallander et al., 2003). Along with this positive epidemiological change, unique challenges of an extended lifespan arise for patients with a chr onic health condition. A paramount goal for these individuals is to develop into autonomous, healthy, and wellfunctioning adults (Wallander at al., 2003, p. 143). This is a ne w realm of health care for

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12 providers and clinical research ers working with these conditions, who previously were not routinely faced with the task of helping these children and adolescents make a transition to adult care and subsequently manage their illness through the unique challenges of young adulthood. Not surprisingly, there are a number of questions be ing raised as to how to best care for and prepare adolescents for life as a young adult with a severe chronic illness. This is no more evident and challenging than in th e area of cystic fibrosis. Cystic Fibrosis Cystic f ibrosis (CF), the most common fatal recessive genetic illness impacting predominantly Caucasians, occurs in one of 3,200 liv e births each year in the United States and currently affects approximately 30,000 people (C ystic Fibrosis Foundation (CFF), 2005). CF progressively impacts the functioning of multip le systems in the body, with over 90% of the morbidity and mortality attributed to degeneratio n in the lungs. Lung function, as measured by forced expired volume (FEV1 % predicted), slowly declines over age at a rate of approximately two percent each year from age 6 to 24, and declin es more gradually ther eafter (CFF, 2003). CF results from a single genetic defect, with over 1,000 variations and the most common defect being deleterious 508 gene (I need to clarify this a little) (Welsh & Smith, 1995). In 1989, this defect was identified on chromo some 7 (Riordan et al., 1989), and holds the code for the cystic fibrosis transmembrane conductance regulator (CFT R). The CFTR gene produces a protein which transports chloride and sodium across cells, par ticularly in submucosal glands. This abnormal electrolyte transport results in the production of thick, sticky mucus, affecting the pulmonary, gastrointestinal, pancreatic, and reproductive sy stems (Welsh & Smith, 19 95). Due to reduced mucus clearance from the lungs, infections develop and result in fibrotic tissue and chronic inflammation (CFF, 2003). Some 85 -90% of patients with CF expe rience pancreatic insufficiency, resulting in difficulty absorbing fats and protei ns which leads to malnutrition. Some patients

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13 develop insulin deficiency, called CF-related diab etes, and liver damage. Regarding reproduction, most men (98%) have problems with fertility, of ten due to the absence, malformation, or blockage of the vas deferens. Women ha ve better reproductive capabilities, though conception is often difficult due to an excess of cervical mucus. Diagnostic criteria for CF consist of both clinic al features and laborat ory results. The gold standard for diagnosis of over 40 years is the sweat test, which can be used with patients as young as 48 hours (CFF, 2003). Diagnosis is determined by the quantity of chloride in the sweat sample. Approximately 50% of children are diagnosed by six months of age (Stark, Mackner, Patton, & Acton, 2003), and 80% are diagnosed by age 3 year s (CFF, 2005). Carrier tests accurately detect approximately 90% of people with one defective gene (Caskey et al ., 1990). Neonatal screening is limited and subject to fa lse positives, but has been associated w ith better nutritional status in early childhood (Farrell et al., 1997). Given the multiple systems affected by CF, the medical regimen is complex and timeconsuming and typically includes an tibiotic treatments, enzyme repl acement, chest physiotherapy, nebulized bronchodilators, nebulized mucolytic agents, and additional calorie intake (Eiser, Zoritch, Hiller, Havermans, & Billig, 1995; Oren stein, 1997). The order and technique of the treatment requires proper training and attention. For example, inhaled mucolytic agents are often prescribed prior to chest physiotherapy, which cons ists of a caregiver clapping on various chest sites (Stark et al., 2003). This da ily medical regimen can be difficu lt to fit into a familys schedule because it can take up to two hours per day (Eiser et al., 1995). As in other chronic illness popul ations, children with CF and th eir families are at increased risk for negative adjustment. In a study using a diagnostic interview, 58% of children with CF received a psychiatric diagnosis, compared to 23% of non-referred children and 77% of children

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14 referred for psychological concerns (Thompson, Hodges, & Hamlett, 1990). In terms of specific symptoms, children with CF reported worry and ne gative self-image. Parents struggle with the additional burden of caring for a child with CF. Primary caregivers report higher stress than normative data, specifically tasks related to CF ra ther than other everyday tasks (Slater, Quittner, Thompson, & Stack, 2003). Mothers spent more time with the child with CF than their healthy sibling, and had less time for recr eational activities compared with control families (Quittner & Opipari, 1994). The challenges of the treatmen t regimen for CF may negatively impact family interactions and functioning. For example, fa mily functioning during mealtime was poorer in families of a child with CF than in families of ch ildren without a chronic illness, particularly in communication, affect management, interpersonal involvement, and behavioral control (Janicke et al., 2005). The extensive medical regimen requires adequate adherence to maintain positive long-term health outcomes across the lifespan (Pa tterson, Budd, Goetz, & Warwick, 1993). Young children tend to exhibit better adherence than adolescents (DiGirolamo, Quittner, Ackerman, & Stevens, 1997), likely due to supervision from parents. In fact Drotar and Ievers (1994) found that adolescents took responsibility for their treatment regimen more than younger children, but required assistance from their parents 37% of the time. These studies lack longitudinal or crosssectional data of young adults. One cross-s ectional study of adherence found that older adolescents were less adherent and less supervised by parents wh en it came to their medical treatments (Modi et al., in pres s). Adolescents seek independen ce during this time and may not want as much assistance from their parents. Decreased parental supervision and adherence was associated with worse medical outcomes in adoles cents with diabetes (Anderson et al., 1997).

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15 Thus, adolescence represents an im portant period to address adhere nce issues, particularly given the lack of research regardi ng adherence from adolescence to adulthood (Stark et al., 2003). The Changing Epidemiology of Cystic Fibrosis As children with CF develop through and beyond adolescence, they face even m ore challenges associated with managing their illnes s within the context of increasing independence as an autonomously functioning young adult. This is a growing issue as the epidemiology of CF continues to change (FitzSimmons 1993). In 1955, few children with CF survived to school age (CFF, 2003; 2005). Due in part to improvements in medical treatments, the life expectancy doubled from 14 years in 1969 to 28 years in 1990 (FitzSimmons, 1993). Currently, the life expectancy of a person with CF is approxi mately mid-30s (CFF, 2005). Thus, significant developmental changes have occurred in the CF population. In fact, 40 % of people with CF registered with the CF Foundation are adults. Adults with CF are now involved in many of typical aspects of life that we re previously rare for this population, including completing high school (64.2%), obtaining full-time jobs (35.8%), and marrying (58.3%; CFF, 2005). Negotiating the transition from adolescence to young adulthood and beyond for individuals with CF is complex balancing act between th e new demands of young adulthood and the tasks, behaviors, and restrictions required to manage their illness. As noted previously, adolescents seek increased independence and parents decrease th eir supervision of treatments (Modi et al., in press). A young adult must balance spending ti me with work, friends and completing airway clearance treatments. As individuals with CF age, plans for the future increase in importance. Higher education and employme nt present new challenges for young adults with CF. If adolescent moves away from home, where manu al chest physiotherapy was conducted, a jacket with a compressor to create high -frequency chest wall os cillation could be used independently in a dormitory or apartment. A young adult with CF must learn to cook and plan meals that

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16 incorporate treatment recommendations for increased calories. Enzyme replacement may cause embarrassment in social situations possibly resulting in hesitation to maintain adherence. Risky behaviors, such as smoking, ma y have additional negative imp lications for a young adult with CF compared to healthy peers. These self -care behaviors are cri tical both to normative development and to growing up with CF. More over, young adults with CF may also become more interested in romantic rela tionships and starting families; thus concerns about birth control, pregnancy, and child birth n eed to be addressed. Given these unique challenges that adolescents and young adults with CF must face, the question arises as to how health care providers can best assist thes e individuals in their quest to develop into independent and well -adapted adults within the context of living with and managing CF. For most of their life, these adolescents and young adults with CF have been treated by pediatric pulmonologists that specialize in the care of CF. Howe ver, as adolescents begin to encounter new challenges associated with growing independence and young adulthood, they experience issues that may be more appropr iately addressed by an adult care provider. Transferring health care responsib ility to an adult CF care provider may be a critical piece in helping adolescents and emerging young adults a ssume greater self-care responsibility and manage the challenges of life associated with young adulthood (Blum, 1995). Adult care may provide patients with developmen tally appropriate care by addre ssing issues, such as fertility, birth control, drug and alcohol us e, and transplantation (Webb et al., 2001). Despite the call by the American Academy of Pediatrics and other organizations for developmentally appropriate care (Patterson and Lanier, 1999), mu ch is still unknown about this important period of care and transition. Prior to expanding upon this issue, the concepts of transfer a nd transition in general, and within the context of CF, will be explained.

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17 Transfer and Transition in Health Care As children grow and age, they transition from one stage to another, su ch as the transitions from home to kindergarten (Nelson, 2004), grad e school to high school, and school to work environments (Hanley-Maxwell, Szymanski, & Owens-Johnson, 1998). Developmental tasks involved in transitioning from childhood to a dolescence include education, behavior, and friendships (Roisman, Maste n, Coatsworth, & Tellegen, 2004). The successful navigation through the social and academic developmental ta sks predicts success in romantic relationships and occupations in young adulthood (Roisman et al., 2004). Developmental transitions occu r at various times and rates, depending on the individual. Some adolescents may linger in the period of emerging adulthood, while others may move quickly into independence. Re searchers have attempted to determine when and how a person transitions through various life situations, a nd how to assist adol escents and young adults through this process, within both psychosocial and medical contexts. Transition has been included as a topic for medical students in order to emphasize patient-centered and familycentered care (Hagood, Lenker, & Thrasher, 2005). To clarify the developing nomenclature with regards to the concepts of transfer and transition within health care, Flume and colleagues (2001) have defined transfer as the actual responsibility of care of the pati ent being moved from a pediatric se tting to an adu lt care setting and transition as the purposeful, planned preparation of patients, families, and caregivers for transfer of a patient from a pediatric to an adult care setting (p.444). The transition from pediatric to adult health care wa s emphasized over fifteen years a go in the US Surgeon Generals conference on health care tran sition (Magrab & Millar, 1989). Specifically, the US Surgeon General report identified benefits of tran sition including: normalizing growing older, encouraging independence, increasing adherenc e, providing developmentally-appropriate care,

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18 and supporting long-term goals. It is well recogni zed that the typical course of an illness may create difficulties in the pro cess of transitioning from childhood to adulthood (While et al., 2004). For example, children with chronic health conditions have changing health care needs as disease progresses, as well as changes in logist ical needs like insurance coverage and access to adult providers. Barriers to transition include the patients relationship with the pediatric team and hesitation to leave (Viner, 2001). This hesitation may also be on th e part of the pediatric team. Adult providers may not show as much interest in a disease with pediatric origin compared with diseases originating in adulthood. Thus, it is be coming clearer that heal th care transition is a complex and dynamic process (Reiss & Gibs on, 2002), which researchers and health care professionals are still struggling to define and understand. Transfer and Transition in CF There is a lack of uniform agreem ent as to how to best address the process of transition for patients with CF (Webb, Jones & Dodd, 2001). Patterson and Lanier (19 99) note the lack of agreement regarding the necessity to transition, su ch that the American Academy of Pediatrics allows occasions of continued care by a pediatri cian, while the Society of Adolescent Medicine suggests that all adolescents move to adult health care. Although some cases of remaining with the pediatric provider are wa rranted, both organizations em phasize the importance of developmentally appropriate care. Expectations for patients in pedi atric and adult clinics likely differ due to philosophical differences. Pe diatric clinics emphasize advising and supporting patients, while adult clinics collaborate and assume independence from patients (Bryon & Madge, 2001). Some 44 CF Foundation-accredited adult CF progra ms exist in the United States (Stark et al., 2003). Despite the availability of an adult provider, approxima tely 25% of adults with CF

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19 receive care from a pediatrici an (Anderson, Flume, Hardy, & Gr ay, 2002). Across a number of studies, no standard practices as to when and whether to transfer care fr om pediatric to adult health care should occur were found (Anderson et al., 2002; Boyl e, Farukhi, & Nosky, 2001). Brumfield and Lansbury (2004) allude to the res ponsibility of the pediatric clinic to prepare adolescents for the move to adult care. Adult centers also play an active role in assisting adolescents and young adults. In light of the lack of standard practices, important developmental issues may not be adequately addressed. Not surprisingly, a number of different program s have been developed to increase and improve the transition from pediatric to adul t health (Reiss & Gibson, 2002). Some transition clinics consist of both pediatri c and adult providers seeing a patient together, often in the pediatric clinic, to assist with th e transition of care from one provi der to the other. This type of joint program is currently being evaluated in Lo ndon; interview and questionnaire data have not yet been reported (Lowton et al., 2005). Adol escent-specific clinics provide treatment for only adolescents with CF. These clinics often exte nd from pediatric clinics, but emphasize issues specific to this age group. Alternatively, patients may abruptly move from the pediatric to adult clinic without any discussion or preparation. This direct transfer of ca re may be reasonable for patients whose disease minimally impacts their li fe (While et al., 2004). Finally, some patients choose not to transition care at al l, and remain in the pediatri c clinic as an adult (Bryon & Madge, 2001). Philosophical differences between pediatric a nd adult clinics emphasi ze different aspects of the progression of CF (Bryon & Madge, 2001). Patients may vi ew that the emphasis of care changes from a focus on growth in pediatric care to the progressi on of the disease in adult care (Brumfield & Lansbury, 2004). However, distinct benefits of the adult clinic should be

PAGE 20

20 considered. The process of transition provi des an opportunity to evaluate and improve knowledge related to CF (Chapman & Bilton, 20 04). Some important issues receive less attention in the pediatric clinic. For example, fertility, birth control, drug and alcohol use, and transplantation may be more e ffectively addressed in adult settings (Webb et al., 2001). Specifically, one study found that 26% of males fi rst learned about their infertility at age 20 (Fair, Griffiths, & Osman, 2000). Nasr and colle agues (1992) found that family planning issues were more effectively addressed in the adult c linic. Social workers in adult centers assist patients in addressing the effects of CF on their ability to work and attend social functions (Stark et al., 2003). Other topics, such as insurance coverage and disability, may receive more attention in adult-oriented clinics. As the life expectancy increases for people with CF, adult-oriented clinics will likely address the charges for deve lopmentally appropriate ca re, as well as provide hope for longevity (Schidlow, 2002). Despite the existence of various transition progr ams, there is a dearth of objective, databased outcome studies to address the success of transition programs. This lack of outcome studies has been corroborated by a number of researchers (e.g., S cal & Ireland, 2005; Bryon & Madge, 2001). Most studies of transition continue to focus on qualitative aspects, particularly on the opinions of various people (While et al., 2004) Moreover, there is limited agreement as to the best markers of positive outcome of transfer. Though transition programs may result in positive responses from patient and families, th e long-term psychosocial and health outcomes associated with transition programs is unknown. Answering these questions will require longitudinal studies across multiple sites to delineate the best transfer interventions. Barriers to Transition In addition to the lack of standardized tran sition program s, other ba rriers may hinder this process. Schidlow and Fiel (1990) have categorized obs tacles to transition as stemming from the

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21 patient, the family, the pediatric caregiver, and th e adult caregiver. The patient may have learned dependent behavior, hindering se lf-care independence. The fa mily may be controlling and overprotective, possibly impacting social support. Finally, the pediatri c and adult caregivers determine the environment where transition ta kes place. Additionally, a strong emotional bond with the pediatric provider has been considered a barrier to transition. Patients and parents hesitate to leave the pediatric clinic due to their comfort with the pediatric team. Alternatively, concerns specifically related to the qualifications of the adult provider have been identified as a barrier to transition (Zack et al ., 2003). Pediatricians express mo re concern about transition than parents, and parents express more concern than patients (Flume, Anderson, Hardy, & Gray, 2001; Anderson et al. 2002). The identification of va riables related to when best to transfer to adult care providers, and ultimately which variables are related to successful transfer, may alleviate some of these concerns. These factors may also contribute to the establishment of guidelines for when to transfer. Guidelines for Transition in CF Despite the importance of transition, there ex ists no clear guidelines or system atic method of judging whether an adolescent is sufficiently prepared for tr ansfer (Cappelli, MacDonald, & McGrath, 1989, p. 218). Though general guidelines for adolescent care (S cal, 2002) and selfcare behaviors (Betz, 2000) are av ailable, no guidelines exist regarding transition from pediatric to adult health care in CF (Schidlow, 2002; Star k et al., 2003). Boyle and colleagues (2001) note that existing transition guidelines focus on non-pul monary disease, and therefore suggest a need to develop distinct criteria for transferring patients with CF. With the amount of variation in practice and lack of empirical evidence to guide practice, it is not su rprising that the CF Foundation has not yet adopted prac tice guidelines for this critical phase in life. However, the

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22 CF Foundation (1998) did state that CF centers should have identified an adult provider by the year 2000. Unfortunately, this goal has not been met. As a result, health care professionals use a vari ety of factors to determine when to transfer patients from pediatric to adult health care, su ch as age, marital status, pregnancy, patients preference, and perceived maturity (Anderson et al., 2002). Issues related to disease severity, such as transplantation, present additional obstacles for transfer to adult care (Taylor, Tsang, & Drabble, 2006). In a study of patients percepti ons regarding transfer to adult health care, age (median of 18 years) was identified as the most frequently used criterion, with the application of this criterion occurring in 41.2% of the sample (Anderson et al., 2002). In addition, Flume and colleagues (2001) report that physic ians perceive that transfer typically occurs around age 18. However, age may not be an adequate measures of a patients readiness to transfer as it does not take into account their knowle dge, skills, and available support that will allow them to independently manage their disease(Patton, Graham, Varlotta, & Holsclaw, 2003, p. 123). Vega-Bricenof and colleagues (2006) suggest th at transition should occur according to the individual patients developmental level. Co mmunication between pediat ric and adult providers and self care independence has been identified as important factors related to transition (Parker, 2007). This case description of a relationship between a pediatric and an adult clinic revealed that physical proximity promoted communicatio n between centers, particularly regarding information and planning regard ing transition of patients. Self-Care Independence Self-care in dependence has been called the keystone to transition readiness (Betz, Redcay, & Tan, 2003). Self-care independence desc ribes the autonomy of a patient in managing their treatment regimen and health care. As adol escents gain independence in all aspects of life (Russell, Reinbold, & Maltby, 1996), they begin to assume incr easing responsibility for their

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23 medical regimen from their pare nts. Adolescents, themselves, recognize self-care independence as important for being prepared to attend th e adult clinic (Westwood, Henley, & Willcox, 1999). Thus, strategies and measures to assess dise ase-specific self-care independence seem are warranted (Patton et al., 2003), and may allow for th e identification of partic ular areas of success or potential improvement. Self-care independence has been measur ed using predominantly questionnaire methodologies. For example, parent report of child and adolescent self-care skills has been used in diabetes (Wysocki et al., 1996). Questionnaires regarding family responsibility for the treatment regimen also indicate whether the parent or child assumes primary responsibility for diabetes care (Anderson, Auslander, Jung, Miller & Santiago, 1990). Unfortunately, there is a dearth of cystic fibrosis specific measures of self -care behaviors. Existing measures of CF selfcare independence fail to yield practical inform ation that can help research and patient management (Patton et al., 2003). In response, Patton and colleagues (200 3) created a parentreport questionnaire regarding self-care behaviors for use in CF, called the Self-Care Independence Scale (SCIS). This measure co vers the various domains of CF treatment regimens, including nutrition, enzymes, oral medicat ions, vitamins, airway clearance, nebulized medications, and communicating with the medical team. The items are listed within domains, and asked whether the child does or is able to do a number of behaviors. For example, an item may read, Does or can your child Know how long to perform ches t physiotherapy? The parent answers yes or no to each item. Th e SCIS has demonstrated adequate psychometrics as shown by the following: internal consistency of .93, test-retest reliability of .81, construct validity with age (r = .67, p < .001), concurrent validity with CF knowledge (r = .62, p < .01), and concurrent validity with general dependence (r = -.26, p < .05). This measure has been

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24 recommended for tracking self-care independenc e longitudinally, developing treatment plans, screening for participation in transition programs, and crea ting descriptions of normative acquisition of self-care skills (Patto n et al., 2003). To date, the benefits of this measure have not been utilized as an outcome in a study re lated self-care indepe ndence in adolescents. As children with CF develop into adolescen ts and young adults, they are encouraged to assume joint, followed by independent, care of their treatment regimen and overall illness management. Thus, it is important that research ers and clinicians ascert ain the adolescents or young adults perspective of their level of self-care independence. A self-report version of a self-care independence measure would allow for quick assessment of self-care, which would allow for development of appropriate treatment plan s to improve specific behaviors related to the patients treatment regimen. Another benefit of a self-report self-care independence measure is the ability to track progress over time. While pare nts may take turns taking an adolescent to a medical appointment, the adolescent would always be available as a consistent informant. A measure of self-care independence might be a useful tool to predict when a patient is ready to transfer to adult-oriented care. Even after th e patient transfers to the adult clinic, monitoring self-care independence would allow the identif ication of areas for potential improvement. However, no patient self-report measures exist that yield specific behaviors related to the CF treatment regimen. This type of data best aids both research and patie nt disease management. Correlates of Self-Care Independe nce and Readiness to Transfer As previously noted, there are a num ber of othe r criteria that have been considered by health care providers for determining whether a patient with CF is ready to transfer from pediatric to adult-oriented care. Identifying correlates of readine ss to transfer to adult-oriented health care is necessary in order to develop interventions that targ et specific variables. Everyday cognitive abilities, family func tioning, and parental distress a ll may impact the adolescents

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25 ability to care for themselves, which may ultimately impact their long-term readiness to transfer and overall successful transition. However, to the authors knowledge no study has examined the impact of these variables on self-car e independence and readiness to transfer. Executive Functions Executive functions describe behaviors of c onsidering inform ation, making decisions, and expressing those decisions (Gallagher, 2007). These cognitive processes may be important when people with a chronic illn ess understand their disease mana gement, decide to take their medication, plan to do so, and complete the ta sk. In older adults, memory and executive functions predicted their adherence to oral medications, as measured by electronic monitor pill bottle covers (Insel, Morrow, Br ewer, & Fiqueredo, 2006). Lower adherence was also associated with worse executive function in a sample of HI V positive adults (Hinkin et al., 2004). In a study of adolescents with type 1 diabetes mellitus, lower executive functions was associated worse metabolic control (Detzer, Whitaker, Isquith, Christiano, & Casella, 2004). Bagner and colleagues (2007) found that pare nt report of better executive f unctioning was related to better adherence in children with type 1 diabetes, whil e age was unrelated to th ese variables. This suggests that parents may believe that children w ho are better able to plan and organize are also applying these skills to their health care re gimen. Although executive function has been studied in relation to estimates of adhe rence and health status, it has no t been compared with self-care independence. The ability of th e adolescent to organize medicati ons and plan treatments likely relate to the amount of responsibility they assume for their own care. Family Factors Com pared to the lack of research on execu tive functions and a dherence in CF, some research between family factors a nd adherence in CF exists. Family factors have been identified as associated with CF treatment adherence in a number of studies (e.g., Abbott, Dodd, Gee, &

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26 Webb, 2001). In study of patients with CF and their families, observed positive family relationship quality predicted be tter treatment adherence to ai rway clearance and nebulized medications (DeLambo, Ievers-Landis, Drotar & Quittner, 2004). Specifically, family relationship quality accounted for 9.6% of the va riance in mothers reports and 14.9% of the variance in fathers reports of adherence, a bove and beyond demographic variables and disease severity. Less recreation and more emotional expressiveness in families was related to greater compliance (Patterson, 1985). More organization al so correlated with compliance (Patterson et al., 1993). Given the association between fam ily factors and adherence, better family functioning likely relates to more self-care independence. Families with positive interactions, good communication, and sufficient support provid e an environment that may foster the development of self-care skills. Parental Distress A num ber of studies have examined the adjust ment of parents of children with CF. For example, Slater and colleagues (2003) found in creased stress and depression in parents of children with CF, compared with normative data. Increased parent ing stress is associated with parent ratings of decreased a dherence with nutritional recomme ndations (Eddy et al., 1998). In terms of diagnostic criteria, depr ession is related to decreased motivation to complete tasks and impairments in daily functioning (American Psyc hiatric Association, 1994). Thus, assisting a child with complex medical treatments may be hindered by depression. As adolescents assume greater responsibility for their me dical treatments, it may be chal lenging for parents to intervene to make certain that treatments are completed (F oster et al., 2001). For a distressed parent, this may be particularly difficult. Depressed pare nts may also lack motivation in teaching their children to take more responsibility for their treatments.

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27 Specific Aims and Hypotheses As patients with CF are living longer, transferring from pedi atric to adult health care is becoming an increasingly prominent issue. Give n the theoretical relationship between self-care behaviors and successful transfer to adult care, the proposed st udy seeks to develop and validate a patient self-report measure of se lf-care independence, and measure potential correlates of selfcare independence in patients with CF. The st udy will examine potential correlates of self-care and readiness to transfer, and de termine if self-care serves as a mediator between psychosocial variables (i.e., executive functi ons, family functioning, and parent al distress) and readiness to transfer. The specific aims and hypoth eses of this study are as follows: 1) To adapt a self-report version of a measure of self-care independence, modified from the existing parent-report version. a. It is predicted that the patient-report self-care measure will demonstrate adequate test-retest reliability ove r a four-week period. b. It is predicted that the patient-report self-care measure will demonstrate concurrent validity with a CF knowledge questionnaire. c. It is predicted that the patient-report self-care measure will demonstrate adequate internal consistency. d. It is predicted that the patient-report self-care measure will demonstrate discriminative validity by yielding significantly different scores as reported by patients in the pediatric or adult clinic, with patients in the pedi atric clinic scoring lower than patients in the adult clinic. 2) To determine the relationship between parent and patient report of self-care independence. It is hypothesized that patient and parent reports of self-care will be positively correlated. Moreover, it is predicte d that patient will report higher levels of self-care than their parents. 3) To examine the association between psyc hosocial variables with patient and parent reports of self-care independence. It is hypothesized that executive functions, family functioning, and parental distress will be associated with pare nt report and patient report of self-care independence, such that executi ve functions and family functioning will be positively associated with self-care, while pa rental distress will be negatively correlated with self-care independence.

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28 4) To determine the relationship between re ported self-care independence of pediatric patients with CF and their readiness to transfe r from the pediatric to the adult clinic. After controlling for age, income and disease severity, it is e xpected that both parent and patient report of self-care independence will be positively associated with the physicans rating of readiness to transfer. 5) To examine a mediator model that describes the relations hip between the psychosocial variables (executive functions, family functioning, and parental distress), self-care independence, and readiness to transfer. a. It is expected that patient reports of self-care independence will mediate the relationship between the each of the psychosocial variables (executive functions, family functioning, and parental distress) and the physicians rating of readiness to transfer. b. It is expected that parent reports of self-care independe nce will mediate the relationship between the each of the psychosocial variables and the physicians rating of readiness to transfer.

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29 CHAPTER 2 METHODS Participants A total sam ple of 60 participants with CF, 50 patients from pediatric clinics and 10 patients from the adult clinic, were recruited for particip ation in this study. Pedi atric participants were enrolled from the pediatric CF care centers at University of Florida ( n = 11), East Tennessee Childrens Hospital ( n = 15), and Cincinnati Children s Hospital Medical Center ( n = 24). Institutional review boards at ea ch site approved the project. Patients and parents provided assent and consent prior to partic ipating. Pediatric patients range d in age from 12 to 24 years old ( M = 15.93, SD = 2.89). Sixty pediatric patients were invite d to participate. Of those patients, nine patients declined to participate due to th e following reasons: four expressed interested in participating but did not sign cons ent due in part to their lack of availability that day, three patients declined to participate primarily du e to the burden of taking the time required to complete the measures, and two patients did not want to participate in a CF-related project. One family dropped out after feeling uncomfortable w ith the financial questions. All pediatric participants who participated were mailed a s econd self-care independenc e measure. Of those mailed, 54% were completed and returned ( n = 27). Adult patients ( n = 10) were recruited from the CF car e center at University of Florida ( n = 3) and from University of Miami ( n = 7). Adult patients ranged in age from 18 to 38 years old ( M = 26.8, SD = 5.67). All adult patients who were recruited from these two clinics agreed to participate in the study. Inclusion/Exclusion Criteria Children and adolescents with CF ages 12 years and older attending the pediatric CF clinics were invited to particip ate in the study. In addition, adults with CF ages 40 years and

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30 younger attending the adult CF clinic were invited to participate in the stu dy. Participants with CF must have carried their diagnosis for at le ast one year. Participants aged 17 and younger had the permission of a parent or legal guardian to participate. Exclusion criteria include participating patient or parent/legal guardian unable to read English at the 5th grade level, and patient or parent with a major psychiatric disorder. Procedure Institutional Review Board Approval The approval of the Ins titutional Review Bo ard at each participating CF center (the University of Florida Health Science Center (UF), Cincinnati Childrens Hospital Medical Center (CCHMC), East Tennessee Childrens Ho spital (ETCH), and University of Miami(UM)) was obtained prior to implementation of recruitment and data collection protoc ol at that site. Recruitment A m ember of each medical team mailed a letter to patients and parents of pediatric patients who have attended a clinic appointment within the past year. The letter included a description of the project, eligibility cr iteria, and the investigat ors contact information, as well as a toll free number to allow patients to call to enroll in the study. Families and adult patients were invited to contact the research team to ask questions or en roll in the study. Alternatively, each family or adult participant could choose to mail their contac t information to the Investigator in order for the research team to contact the family. As an additional method of recruitment, families were approached by a member of the medical team during clinic visits, provided with a brief description of the study, and invi ted to participate in the stud y. Patients and parents were provided the option of completing th e survey during their clinic vi sit while they were waiting to been seen, completing the survey in the waiting room after their clinic visit, or taking the survey home to be completed and returned in an addressed and stamped envelope. Families who

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31 expressed interest in participating received two copies of the consent fo rm and all the measures at clinic or by mail to the familys home. Survey Administration Participan ts who preferred to complete the fo rms during their clinic visit first signed the informed consent form and then completed the measures in the exam room or waiting room. Participants who choose to complete the measur es at home signed consent forms at the clinic, and then were given the questionn aires, as well as an addressed, stamped envelope to return the measures to the primary investigator. In addition, for participants who completed measures at home, follow-up phones calls were conducted as a re minder. Each participant (the pediatric patient, parent, or adult patient) was compensate d for their time with $5 upon the completion of the assessment. Adaptation and Validation of the Sel f-Care Independence Scale-Self Report Adaptation of the Patient-Repor t S elf-Care Independence Measure The original Self-Care Indepe ndence Scale-Parent Report (S CIS; Patton et al., 2003) was adapted to create a self-report m easure for youth, identified as the Self-Care Independence ScaleSelf Report (SCIS-SR). The pronouns were change d to reflect the perspective of the patient, rather than the parent. For example, an item like Does your child know when to take enzymes? was changed to Do you know when to take your enzymes? After initial changes were made, the measure was tested for readabil ity and face validity. A pediatric pulmonologist, pediatric psychologist, and gra duate students reviewed the me asure and provided feedback related to clarity, as well as depth and breadth of content. The final measure consisted of 44 adapted items. Establishment of the psychometric properties of this measure involved determining the internal consistency, test-retest reliability, conc urrent validity, and disc riminative validity.

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32 Internal Consistency Intern al consistency was calculated using baseline data from all participants who completed the Self-Care Independen ce Scale-Self Report (SCIS-SR). Test-Retest Reliability Each participating patient from the pediatric clinic was m a iled a second copy of the SelfCare Independence Scale-Self Report (SCIS-SR) seven days after completion of the SCIS-SR with the original survey packet. They were asked to complete the measure again and to return the measure by mail within two weeks. Measures that were completed and returned within 4 weeks of when the retest measure was sent were included for analysis. Concurrent Validity Each participant with C F atte nding one of the pediatric CF clinics also completed the CF Knowledge questionnaire. Scores on the CF knowledge questionnaire were then compared to scores on the Self-Care Indepe ndence Scale-Self Report (SCISSR) to establish concurrent validity. Discriminative Validity Patien ts with CF attending the adult CF clinic at Shands/UF or University of Miami were recruited to complete the Self-Care Independence Scale-Self Report (SCIS-SR). The scores of patients from the adult clinics were compared to the pediatric patients. Patients from the adult care clinic were also asked to complete a demographic measure. Scores from the patients in the adult clinic were compared to scores from par ticipants in the pediatric clinic to provide a measure of discriminative validity.

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33 Measures Demographic Questionnaire De mographic information was collected using a 24-item questionnaire developed for use in this study. Parents and adult patients responded to questions about themselves, such as age, gender, marital status, work status, education, race, and household income. Parents and adult patients also provided information about their participating child or adolescent, including age, grade in school, medical history, an d availability of health insura nce. Parents and adult patients also provided general information on others in the home, including their ages, relationships, and diagnoses. Behavior Rating Inventory of Executive Function The Behavior Rating Inventor y of Executive Function Self Report Version (BRIEF-SR; Guy, Isquith, & Gioia, n.d.) was used to m easure executive functions in everyday life from the self report of children, adolescents and young adults aged 11 to 22 in the pediatric CF clinics. This 80-item measure has Likert-t ype ratings ranging from never to often on a 3-point scale. This measure was based on the BRIEF (Gioia, Isquith, Guy, & Kenworthy, 2000). The creators of the measure recommend at least a fifth grade reading level of the participants. The measure required approximately 10 to 15 minutes to co mplete, and produced the following subscales: Inhibit, Shift, Emotional Cont rol, Monitor, Working Memory, Plan/Organize, Organization of Materials, and Task Completion. Combinations of these subscales comprised the Behavioral Regulation and Metacognition Indi ces, as well as the Global Executive Composite (GEC). Two validity scales, Inconsistency and Negativity, assisted with the interpretation of the scores. In previous research, the BRIEF-SR demonstrated high internal consistency for the GEC ( = .96) and adequate consistency within scales ( = .72-.96). Test-retest re liabilty produced a strong correlation ( r = .89) over a five week period. Corr elation with the parent version ( r = .56)

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34 suggested adequate inter-rater agreement. Given th at skills of planning and organizing are likely important for self-care indepe ndence behaviors, specific to managing CF, the Global Executive Composite was used in this study. Family Assessment Device The Fam ily Assessment Device (FAD; Epstei n, Baldwin, & Bishop, 1983; Miller, Epstein, Bishop, & Keitner, 1985) was used as a measure of family functioning based on the McMaster model, based on a systems perspective (Miller, Ryan, Keitner, Bishop, & Epstein, 2000). This 60-item measure described families based on se ven scales: Problem Solving, Communication, Roles, Affective Responsiveness, Affective I nvolvement, Behavioral Control, and Overall Family Functioning. Family members, including children, age 12 and older can complete this measure (Epstein, Baldwin, & Bishop, 2000), by rating items on a 4-point Likert-type scale ranging from strongly agree to strongly disagree. Higher scores suggested poorer family functioning. Studies revealed ad equate internal consistency ( = .71-.92) and test-retest reliability (r = .66-.76) in clinical and nonc linical samples (Miller et al., 1985; Kabacoff et al., 1990). Concurrent validity with other family f unctioning measures has been demonstrated in a pediatric asthma sample (Bihun et al., 2002). Based on existing liter ature that multiple aspects of family functioning (e.g., family communication, interaction styles, behavioral control, and emotional regulation) are related to adherence, the overall family functioning scale will be used in the current study. Brief Symptom Inventory The Brief Sym ptom Inventory 18 (BSI-18; Derogatis, 2001) assessed distress in adults by soliciting responses to 18 items using a 5-point Like rt-type scale, ranging from 0 (not at all) to 4 (extremely), regarding how often they experi enced certain symptoms in the past week. Answers to these items produced scores on three dimensions of depressive, anxious, and somatic

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35 symptoms, as well as a Global Severity Index (GS I). A prinicpal components analysis supported the use of the three subscales. This measure was derived from the Brief Symptom Inventory (Derogatis, 1993) and the Sympto m Checklist-90-Revised (SCL-90R; Derogatis, 1994). The BSI-18 demonstrated concurrent validity with the SCL-90-R, as evidenced by correlations between comparable subscales (r = .91-.96). Internal consistenc y ranged from adequate to good across subscales and the GSI ( = .74-.89). The GSI was used in this study as a measure of the overall distress and psychological functioning of parents. Self-Care Independence Scale Patton and colleagues (2003) developed a pare nt-report m easure of a childs self-care independence (SCIS) for the CF medical regimen. Scores ranged from 0 to 44, with a mean total score of 28 in a sample of children ages 4 to 17 years (Patton et al., 2003). Items, such as knowing when to take enzymes, were answered with a yes or no response. All 44 items requested a response of yes or no. This meas ure has demonstrated adequate psychometrics. Specifically, high internal consistency was demo nstrated by a Cronbachs coefficent alpha of .93. Test-retest reliability ove r a 4-week period yielded a si gnificant correlation of .81 ( p < .001). This measure demonstrated adequate concurrent validity, as evidenced by the correlations with a CF knowledge interview ( r = .62, p < .01) and with a measure of dependent behaviors ( r = -.26, p < .05). This study will examine the total score of items endorsed as yes, with higher scores indicating more self-care independence. Self-Care Independence Scale-Self Report The original parent-report ve rsion of the SCIS was adap ted for adolescents and young adults as a s elf-report measur e (see Appendix A). The steps of validation of the Self-Care Independence Scale Self Report (SCIS-SR) were presented in the Proce dures section. Scores were calculated consistent with the parent-report measures, ra nging from 0 to 44. The SCIS-SR

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36 will be used in the same way as the SCIS, such that the total number of items endorsed as yes will be examined in this study. As with the pare nt-report measures, higher scores indicate more self-care independence. CF Knowledge Questionnaire The CF Knowledge Questionnaire (CFK; Quittn er & Drotar, 1997) measure consisted of 21 multiple choice questions, and assessed patients knowledge about CF. This shorter version of the more extensive knowledge measure (Quittner & Drot ar, 1997) demonstrated adequate internal consistency ( = .91) in a study of 47 children and adolescents aged 7 to 17 (Davis, Quittner, Stack, & Yang, 2004). Overall knowledge scores were calculated as percentage correct. Raw scores of knowledge can range from 0 to 36, with higher scores indicating greater CF knowledge. Rating of Readiness to Transfer Patients, parents, physicians, nurses, and social workers were asked to rate the participa ting pediatric patients on their readiness to transfer to the adult c linic. A 5-point Likerttype scale allowed each informant to rate patients from not at all ready to has been ready ready to transfer. This scale was developed for use in this st udy (see Appendix B). In addition to the rating, informants were asked to rank or der their reason for th e rating. Reasons could include items presented to the informant, such as age, health status, emotional maturity, issues related to current functioning, and developmental issues. Informants also had a choice of other, with which they could write in additio nal reasons for their rating of readiness. Pulmonary Function Tests Forced expiratory volume in one second (FEV1 % predicted) has been used as a primary indicator of lung function in CF (Orenstein, 1997). As more obstruction accumulates in the lungs, less volume of air can be expired. Mild lung function is categori zed as 70-99%, moderate

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37 as 40-69%, and severe as less than 40% (Fiel, FitzSimmons, & Schidlow, 1994). Lung function data was extracted from the clinic chart or me dical record by either a member of the medical team or the primary investigator from the day during which the initial as sessment was conducted. This will serve as a measure of disease severity. Power Analyses Based on Patton and colleagues (2003) finding of a strong correlati on between test and retes t scores on a parent-report self-care measure ( r = .81, p < .001), power analysis (using G*power) suggests 17 participants are needed to find a significant positive association between the first and second assessments. Previous re search regarding the pos itive correlation between parent report of self-care and childrens scores on a CF knowledge interview ( r = .62, p < .01), power analysis recommends 29 participants to de tect a similar relationship. For the regression models, a minimum of ten part icipants per independent vari able will be recruited, as recommended by Harris (1985). Alternativel y, Harris also suggests a minimum of 50 participants for a regression analysis. Thus, a pproximately 50 participants are needed for these analyses. Statistical Analyses Descriptive statistics were conduc ted for all relevant variables. Analyses for the specific aim s are as follows: 1) To adapt a new patient-report version of an existing parent-report measure of self-care independence. a. Internal consistancy of the SCIS-SR will be measured using Cronbachs coefficient alpha. b. The short-term stability of the total scor es on the SCIS-SR from time 1 and time 2 will be examined using Pearsons r correla tion coefficient to determine the testretest reliability over a four-week period in a subset of participants. The subset of participants will be defined as those part icipants who return the questionnaire in

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38 the mail. The response rate will be repor ted as the percent of participants who returned the second SCIS-SR ba sed on the original sample. c. Concurrent validity will be determined by a Pearsons r correlation coefficient between a CF knowledge questionnaire and total scores on the SCIS-SR. d. Independent samples t-tests will be used to determine whether the mean scores on the SCIS-SR are significantly different be tween the participants in the pediatric and adult clinics at Shands/UF. 2) To determine the relationship between parent and patient report of self-care independence. Pearsons r correlation coefficient will be used to examine the relationship between parent a nd patient report of self-care independence. Total scores will be compared using paired samples t-tests, to determine if there is a statistically significant difference between parent and pa tient report of self-care independence. 3) To examine the correlation between psychosoc ial variables and self -care independence, as reported by patients and their parents. Two linear regression models will be used to determine the amount of vari ance in self-care independenc e that is accounted for by executive functions, family functioning, and parental distress, while controlling for patients age, income, and disease severity in the first block. The first regression will examine the variance in patient report of self-care, while the second regression will examine parent report of self-care independence. Beta weights will be examined to determine the individual contribution of the variables. 4) To determine the relationship between repor ted self-care independence and readiness to transfer to the adult clinic. Two hierarchical regressions will be conducted. a. In the first regression, age, income, and disease severity (measured by lung function) will be entered in the first block, and patient report of self-care independence will be entered in the second block as a correlate of the physicians rating of readiness to transfer. b. The second regression will evaluate parent report of self-care independence as a correlate of the physicians rating of readiness to tran sfer, while also controlling for age, income, and disease severity. 5) To examine a mediator model that describes the relationship between the correlates of self-care, self-care independe nce, and readiness to transfer a. A mediator model of self-care independe nce will be tested if hypotheses 3 and 4 are supported. Thus, psychosocial vari ables would significantly account for variance in self-care independence, and self-care independence would significantly account for vari ance in readiness to tran sfer, as recommended by Baron and Kenny (1986). In or der to test the role of self-care independence as a mediator, a hierarchical regression will be conducted. The first block will control for demographic variables of age, income, and lung function. The second block will contain the psychosocial variables of executive functions, family functioning,

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39 and parental distress. The third block will consist of self-care independence. Self-care independence will mediate the relationship between psychosocial variables and readiness to transfer, if se lf-care better accounts for the variance in readiness to transfer, above and beyo nd the contribution of demographic and psychosocial variables. b. The model will be tested using both the parent report and patient report of selfcare independence in order to examine these relationships by each informant.

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40 CHAPTER 3 RESULTS Demographics Pediatric Clinic Patients Age ranged from 12 to 24 years ( M = 15.89, SD = 2.89). Patients recruited from pediatric clinics were similar in age (UF-CCHMC ( t (32) = 1.11, p = .28), UF-ETCH ( t (23) = .43, p = .68, CCHMC-ETCH ( t (37) = -.88, p = .39); see Table 1). Gender of the pediatric patients was mostly male (64%). The average lung function, as measur ed by forced expiratory volume in one second (FEV1% predicted), was in the mild range ( M = 79.42, SD = 21.48). Specifically, 70.8% of pediatric patients had mild disease severity to normal lung function, 27.1% moderate, and 2.1% severe. Lung function did not sign ificantly differ by site (UF-CCHMC ( t (32) = -.29, p = .77), UF-ETCH ( t (23) = -.92, p = .37, CCHMC-ETCH ( t (35) = -.79, p = .44). Pediatric patients were identified by their parent as 95.6% Caucasian and 4.4% African American. A majority of the participating parents were married (68.2%), while a smaller percentage were divorced (15.9%) or single (15.9%). Parents educa tion ranged from some high school (8.9%), high school graduate (24.4%), some college (28.9%), college gradua te (31.1%), to graduate/professional degree (6.7%). Median income was in the range of $50,000 to $59,999. Most pediatric patients had private insurance (68.9%), while fewer were receiving Medicaid (19%). See Table 2. Adult Clinic Patients Patien ts in the adult clinic ranged in age from 18 to 38 years old ( M = 26.80 years, SD = 5.67). Lung function ranged from severe to mild (FEV1% predicted, 29 to 87, M = 47.00, SD = 27.18). These patients were mostly Caucasian ( 80%), with some patients who were Hispanic (20%). All of the adult patients reported Medica id or Medicare as their primary insurance (see Table 3).

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41 Means and Descriptive Information from Questionnaire Measures Self-Care Independence Scale-Self-Report Out of a total possible score of 44, SCIS-S R scores averaged 37 item s endorsed as Yes(SD = 5.99, range from 13 to 44 items) for the pa tients from the pediatric clinic. The patients from the adult clinic averaged 35 items endorsed ( SD = 7.03, range from 18 to 44 items, see Table 4). Age was not related to the SCIS -SR across patients in both clinic settings (r = .09, p = .49). Knowledge Knowledge scores ranged from 58% to 94% correct ( M = 73.95%, SD = 10.67). Age and knowledge were moderately, positively correlated ( r = .55, p < .001), such that older pediatric patients scored higher on their knowle dge of CF management. Boys ( M = 27.71, SD = 3.75) scored slightly higher on the knowle dge questionnaire than girls ( M = 24.65, SD = 3.22, t = 2.84, p < .01). Knowledge and FEV1 were not significantly related ( r = -.28, p = .054). Commonly missed questions includ ed: foods that contain the mo st energy are fats (91.7%), digestion begins in the mouth ( 81.3%), inhaled antibiotics are most effective if done after airway clearance (70.8%), and antibiotics are used to control bacteria in the lungs (66.7%). Behavior Rating Inventory of Executive Function The Global Executive C omposite was in the normal range on average ( M T = 48.69, SD = 10.27, range 33-75). Five participants had clinic ally elevated problems with the Metacognition Index ( M T = 49.56, SD = 10.10, range 34-70). Five participants reported clini cally significant difficulty with working memory (M T = 50.92, SD = 10.19, range 33-72), four participants with planning ( M T = 48.46, SD = 9.44, range 31-68), four with organizing ( M T = 49.46, SD = 8.78, range 36-73), and five with completing tasks (M T = 49.69, SD = 11.04, range 35-81).

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42 Brief Symptom Inventory Mean parent report of global distress was within the non-clinical range ( M = 5.71, SD = 7.34). Only 8% of parents endorsed sym ptoms indi cate of global distress within the clinically significant range. Family Assessment Device The m ean score for general family functioning was relatively high ( M = 6.04, SD = 1.02, range 1.83 to 7.25). Only 2.6% of the parents repo rt overall family functioning in the clinical range for general functioning compared with cu t-off scores based on nor mative data (Miller et al., 1985). Validation of the SCIS-SR The first aim of the study was to adapt the SCIS for patient report. After changing the wording to be appropriate for self report and re views by experts, this measure was administered to pediatric patients. The results of analysis to examine the reliability and validity of the measure are described below. Internal Consistency Intern al consistency of the SCIS-SR was meas ured using Cronbachs coefficient alpha. Results indicated good internal consistency among the items ( = .87). This score was slightly lower than the original parent-report measure ( = .93; Patton et al., 2003), but was in the good range (Nunnally & Bernstein,1994). Stability The stability of the SCIS-SR was examined using Pearsons r correlation coefficient to determine the test-retest reliability over a four-week period in a subset of participants ( MT1 = 35.70, SD = 6.34, range 13-44; MT2 = 37.81, SD = 7.78, range 14-44). Although all patients were mailed the second administration, only 27 particip ants (56%) returned th e questionnaire in the

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43 mail. Responses on the SCIS-SR at the two time points demonstrated adequate test-retest reliability (r = .75, p < .001), which was similar to the st ability of the original measure ( r = .81, p < .001). Concurrent Validity Concurrent validity was determ ined by a Kendall s tau correlation co efficient, due to nonnormally distributed data, between a CF knowledge questionnaire and total scores on the SCISSR (skewness = -1.88, kurtosis = 5.17). The correlation between knowledge scores and SCISSR showed a weak correlati on, which was just significant ( r = .26, p < .05). Higher knowledge scores were related to higher sc ores of self-care independence. Discriminative Validity An independent sam ples t-test was used to describe whether the mean scores on the SCISSR are significantly different between the participants in the pediatric ( M = 36.73, SD = .86) and adult clinics ( M = 34.50, SD = 2.22). The scores across these tw o clinics were not significantly different ( t (56) = 1.04, p = .30). The first aim of the study was partially suppo rted. Support for internal consistency and test-retest reliabili ty (stability) were found. Concurrent validity was weak, although there was a statistically significant relati onship between self-care inde pendence and knowledge of CF management. This study failed to show discriminative validity of the self-care independence measure. Relationship between Parent and Patien t Report of Self-Care Independence The second aim of this study was to examine the relationship between parent and patient report of self-care independence. Total scores we re compared using paired samples t-tests, to determine whether the difference between parent and patient reports of self-care iSndependence were statistically significant. Parents reported slightly higher self-care independence for their

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44 child (M = 37.29, SD = 5.56, range 18-44) relative to child report ( M = 35.89, SD = 6.26, range 13-44) of self-care independence. However, th ese scores were not significantly different ( t (37) = -1.64, p = .11). In addition, Pearsons r correlation coefficient was used to examine the relationship between parent and patient report of self-care inde pendence. Patient and parent reports of self-care independen ce were moderately correlated ( r = .61, p < .001). Thus, the second hypothesis of the study wa s supported, such that parents and patient agree about the patients self-care independence. Relationship between Psychosocial Variables and Self-Care Independence The third aim of the study was to determ ine the relationship between psychosocial variables and self-care independe nce. Specifically, it was ex p ected that executive functions, family functioning, and parental distress would be associated with parent report and patient report of self-care independence, such that executive functions and family functioning will be positively associated with self-care, while parent al distress will be negatively correlated with self-care independence. Two sets of three linea r regression models were used to determine the amount of variance in self-care independence that is accounted for by executive functions, family functioning, and parental distre ss in the second block, while controlling for patients age, income, and disease severity in the first block. Prior to executing the regression analysis, a correlation matrix including the variables of interest was examined. Contrary to the hypot hesis, the psychosocial variables were not correlated with self -care independence ( rs ranging from -.09 to .03, all p -values were nonsignificant), by either patient or parent report. Although a regression analysis was no longer warranted, it is presented below as it wa s part of the original analytic plan. In the first of a set of three regressions, age, income, and disease seve rity were entered in the first block and the Global Executive Composite score was entered in the second block as

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45 correlates of patient-reported self-care independence. The model accounted for 27% of the variance (F(3,38) = 4.62, p < .01), with age ( = .55, p < .001) as the strongest correlate of patient-reported self-care independence. Th e addition of executive functioning failed to contribute to the model, increasing th e total variance by 2% (F(1,37) = .94, p = .34). Similarly, after controlling for age, income and disease severity (24% R2, F(3,32) = 3.35, p < .05), General Family Functioning did not add to the model (1% R2 F(1,31) = .29, p = .59). This was also true for parental distre ss (see Tables 5-7). In the second set of three regressions, age, in come, and disease severity were entered in the first block and the Global Executive Composite score was entered in the second block as correlates of parent-reported se lf-care independence. The mode l was non-significant after the first block of demographi c variables (F(3,32) = 1.50, p = .23). The addition of executive functioning failed to contribute to the model (F(1,31) = 2.17, p = .15). Similarly, after controlling for age, income, a nd disease severity (12% R2, F(3,32) = 1.50, p = .23), General Family Functioning did not add to the model (0% R2 F(1,31) = .002, p = .97). Parental distress also did not contribute to th e model (see Tables 8-10). Relationship between Self-Care Independence and Readiness to Transfer The fourth aim of the study was to dete rmine the relationship between self-care independence and readiness to transf er to the adult clinic. The ratings of readiness to transfer by the physician were selected as the outcome in these analyses because the medical team, led by the physician, is primarily responsible for the deci sion regarding transfer of care. Although this is often a collaborative decisi on with parents and patients, th e physician often determines the final outcome and the time of tr ansfer of care. On the other hand, cystic fibrosis centers are characterized by their multidisciplinary teams. Given the moderate correlations among team

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46 members, their ratings of readiness were also av eraged to be used as a dependent variable. Two hierarchical regressions were conducted, for each of the following dependent variables: medical teams average rating, physician rating, nurse rating, and social worker rating. Medical Teams Average Rating In the first regression, age, incom e, and disease severity (measured by FEV1 percent predicted) were entered in th e first block, and patient-report of self-care independence was entered in the second block as a correlate of the average of the medical te ams rating of readiness to transfer. The model accounted fo r 59% of the variance (F(3,38) = 18.17, p < .001), with age ( = .81, p < .001) and disease severity ( = .42, p < .001) as the strongest correlates of the medical teams average rating of readiness (see Ta ble 11). The addition of patient-reported selfcare independence did not significantly add to the amount of variance explained above and beyond the variables in block one to the model (F(1,37) = .07, p = .80). This suggests that team members rate older and healthier patients as more ready to transfer than younger or more ill patients. The second regression evaluated pa rent report of self-care in dependence as a correlate of the average of the medical teams rating of readiness to transfer, while also controlling for age, income, and disease severity. The model acco unted for 53% of the variance (F(3,32) = 11.78, p < .001), with age ( = .79, p < .001) and disease severity ( = .47, p < .001) as the strongest correlate of the medical teams average rating of readiness (see Table 12). Similarly, the addition of parent-reported self-care independence did no t significantly add to the amount of variance explained above and beyond the vari ables in block one (F(1,31) = .06, p = .80).

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47 Physician Rating In the first regression, age, incom e, and disease severity (measured by FEV1 percent predicted) were entered in th e first block, and patient-report of self-care independence was entered in the second block as a correlate of the physicians rating of readiness to transfer. The model accounted for 60% of the variance (F(3,34) = 16.48, p < .001), with age ( = .80, p < .001) and disease severity ( = .37, p < .001) as the strongest correla tes of the physicians rating of readiness (see Table 13). The addition of patient-reported self-care independence did not significantly add to the amount of variance explained above a nd beyond the variables in block one to the model (F(1,33) = .64, p = .43). This suggests that physicians rate older and healthier patients as more ready to transfer than younger or more ill patients. The second regression evaluated pa rent report of self-care in dependence as a correlate of the physicians rating of readiness to transfer, while also controll ing for age, income, and disease severity. The model accounted for 45% of the variance (F(3,29) = 7.76, p < .001), with age ( = .68, p < .001) and disease severity ( = .43, p < .01) as the strongest corr elates of the physicians rating of readiness (see Table 14). Similarly, the addition of parent-reported self-care independence did not significantly add to the amount of variance explained above and beyond the variables in block one (F(1,28) = .38, p = .54). Nurse Rating In the first regression, age, incom e, and disease severity (measured by FEV1 percent predicted) were entered in th e first block, and patient-report of self-care independence was entered in the second block as a correlate of the nurses rating of readin ess to transfer. The model accounted for 46% of the variance (F(3,38) = 10.94, p < .001), with age ( = .72, p < .001) and disease severity ( = .42, p < .01) as the strongest correla tes of the nurses rating of

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48 readiness (see Table 15). The addition of patient-reported self-care independence did not significantly add to the amount of variance explained above a nd beyond the variables in block one to the model (F(1,37) = .00, p = .96). This suggests that nu rses rate older and healthier patients as more ready to transfer than younger or more ill patients. The second regression evaluated pa rent report of self-care in dependence as a correlate of the nurses rating of readiness to transfer, while also controlling for age, income, and disease severity. The model accounted for 41% of the variance (F(3,32) = 7.38, p < .001), with age ( = .69, p < .001) and disease severity ( = .48, p < .01) as the strongest co rrelates of the nurses rating of readiness (see Table 16). Similarly, the addition of parent-reported self-care independence did not significantly add to th e amount of variance explained above and beyond the variables in block one (F(1,31) = .07, p = .79). Social Worker Rating In the first regression, age, incom e, and disease severity (measured by FEV1 percent predicted) were entered in th e first block, and patient-report of self-care independence was entered in the second block as a co rrelate of the social workers rating of read iness to transfer. The model accounted for 49% of the variance (F(3,35) = 11.19, p < .001), with age ( = .76, p < .001) and disease severity ( = .33, p < .05) as the strongest correlates of the social workers rating of readiness (see Table 17) The addition of patient-re ported self-care independence did not significantly add to the amount of varian ce explained above and be yond the variables in block one to the model (F(1,34) = .76, p = .39). This suggests that so cial workers rate older and healthier patients as more ready to tr ansfer than younger or more ill patients. The second regression evaluated pa rent report of self-care in dependence as a correlate of the social workers rating of readiness to tran sfer, while also controlli ng for age, income, and

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49 disease severity. The model accounted for 45% of the variance (F(3,31) = 8.55, p < .001), with age ( = .76, p < .001) and disease severity ( = .34, p < .05) as the strongest correlates of the social workers rating of readiness (see Table 18). Similarly, the addition of parent-reported selfcare independence did not significantly add to the amount of variance explained above and beyond the variables in bl ock one (F(1,30) = 1.18, p = .29). Self-care Independence as a Mediator A m ediator model of psychosoc ial variables predicting readin ess to transfer through selfcare independence was hypothesized. Psychosocia l variables were not related to self-care independence, failing to meet one requirement of testing the medi ator model. Similarly, selfcare independence was not related to readiness to transfer. Thus, the mediator model cannot be tested. Exploratory Analyses Readiness to Transfer Pearsons r correlations between ratings of readiness to transfer across patients, parents and m edical personnel are displayed in Table 19. Patients and pare nts ratings of readiness of the patient to transfer were moderately correlated ( r = .58, p < .001). Patients and physicians also agreed moderately ( r = .41, p < .01). The medical team also strongly agreed on their ratings (physician-nurse r = .66, p < .001; physician-social worker r = .65, p < .001; nurse-social worker r = .63, p < .001). Interestingly, pare nts and the medical team di d not agree on the patients readiness to transfer care, with th e exception of a tre nd of the nurse ( r = .30, p = .07). Patients reported the highest ratings of readiness to transfer in comparison to their parent ( t (37) = 2.18, p < .05), the nurse ( t (47) = 2.74, p < .01), and the social worker ( t (44) = 2.40, p < .05). Patients also rated themselves as somewhat more ready to transfer than the physician; however, this difference was not statistically significant ( t (41) = 1.18, p = .24).

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50 Qualitatively, all informants were asked to rank the reasons for their rating of readiness to transfer. The frequency of each reason was exam ined and presented according to informant. Patients, parents, and team members ranked age of the patient highly as a reason influencing their ratings of the patients readiness to transf er to adult care (see Table 20). The patient, physician, and nurse ranked health status in the top three reasons for their readiness rating. Informants were allowed to rank other as a reas on for their rating. They were then encouraged to write a specific reason for their ranking. Both parents a nd team members noted in their reasons for their ratings that often times the topi c of transition had not been discussed. Patients (18%) and parents (10%) noted thei r relationship with the pediatri c team as a reason that they were less ready to transfer. Nurses (4%) and social workers (8%) also noted the familys relationship with the team as a barrier to tran sferring to the adult clinic. Patients (4%) and physicians (6%) identified level of disease knowledge as an influencing factor in their readiness to transfer. Parents (2%) and members of the team (physician 2%, nurse 14%, social worker 4%) noted poor adherence as an impor tant reason for their rating. Knowledge Knowledge was significantly co rrelated to ra tings of readiness by each member of the medical team (physician r = .49, p < .001; nurse r = .45, p < .001; social worker r = .39, p < .01). Higher knowledge scores were rela ted to being more ready to tran sfer care. Knowledge scores were not related to parent or patient ratings of readiness to transfer. Knowledge and Nurse Rating of Readiness to Transfer In an exploratory regression, age, incom e, and disease severity were entered in the first block, and knowledge was entered in the second block as a correlate of the nurses rating of readiness to transfer. The model accounted for 46% of the variance (F(3,38) = 10.94, p < .001), with age ( = .72, p < .001) and disease severity ( = .42, p < .01) as the strongest correlates of

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51 the nurses rating of readiness (see Ta ble 21). The addition of knowledge ( = .33, p < .05) significantly added to the amount of variance (5%) e xplained above and beyond the variables in block one to the model (F(1,37) = 4.19, p < .05). This suggests that knowledge influences the rating by nurses, above and beyond the effects of age and health status, with more knowledge relating to more readiness to transfer. Psychosocial Variables Pearson correlations were exam ined between psychosocial variables and ratings of readiness to transfer. Across all informants, psychosocial variables we re only related to the nurses rating of readiness to transfer (see Table 22). Some of the weak relationships between psychosocial variables and readin ess might have been underpowered for other informants. The nurses rating of readiness to transfer showed a weak but significant relationship with both general family functioning ( r = .37, p < .05) and parental distress ( r = .34, p < .05). More problematic family functioning and more parental distress were related to the nurse rating the patient as more ready to transfer to the adult clinic. Psychosocial Variables and Nurse Rating of Readiness to Transfer In two exploratory regression an alyses, the associations between either fam ily functioning or parental distress and nurse ratings of readiness were exam ined, above and beyond the affects of age, income, and disease severity. The fi rst model, examining family functioning, accounted for 41% of the variance (F(3,32) = 7.38, p < .001), with age ( = .69, p < .001) and disease severity ( = .48, p < .01) as the strongest correlates of th e nurses rating of readiness (see Table 23). The addition of family functioning signifi cantly added to the amount of variance (9%) explained above and beyond the variables in block one to the model (F(1,31) = 5.79, p < .05). This suggests that nurses rate ol der and healthier patients as mo re ready to transfer than younger

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52 or more ill patients. They also rate patients who have worse family functioning as more readiness to transfer. This model was not significant for parental distress.

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53 Table 1. Demographic characteri stics of pediatric patients All Pediatric Centers ( n = 50) UF ( n = 11) CCHMC ( n = 24) ETCH ( n = 15) M SD Range % M SD Range % M SD Range % M SD Range % Age 15.89 2.89 12-24 16.704.22 12-24 15.422.48 12-20 16.132.47 12-20 Gender Female 36 36.4 33.3 40 Male 64 63.6 66.7 60 FEV1 % pred 79.42 21.48 29-118 76.0017.2140-105 78.1321.19 41-118 84.2125.3629-115 Mild 70.8 72.7 69.6 71.4 Moderate 27.1 27.3 30.4 21.4 Severe 2.1 0 0 7.1 Ethnicity White 95.6 75 100 100 Afr. Am. 4.4 25 0 0 Insurance None 2.2 0 4.3 0 Private 68.9 66.6 82.6 46.2 Medicaid 19 33.3 8.7 30.8

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54 Table 2. Demographic characteristics of parents of pediatric patients Percent Informant Mothers 71.1% Fathers 4.4% Self (if above 18 years) 22.2% Other 2.2% Marital status Married 68.2% Divorced/Single 31.8% Work status Full-time 65.2% Part-time 34.8% Education Partial high school 8.9% High school diploma 24.4% Partial college 28.9% College 31.1% Graduate/professional degree 6.7% Ethnicity White 95.6% African American 4.4% Table 3. Demographic characte ristics of adult patients ( n = 10) M SD Range Percent Age 26.80 years5.67 18 to 38 years Gender Female 50% Male 50% FEV1 percent predicted 47% 27.1829 to 87% Ethnicity White 80% African American 0% Hispanic 20% Insurance None 0% Private 0% Medicaid 100%

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55 Table 4. Means and standard deviations M SD Minimum Maximum Self Care Independence Scale SCIS-SR (peds) 36.735.9913.0044.00 SCIS (parents) 37.295.5618.0044.00 SCIS-SR (peds time 2) 37.817.7814.0044.00 SCIS-SR (adult) 34.507.0318.0044.00 Knowledge Total score 26.633.8421.0034.00 Percent correct .74.11.58.94 Readiness to transfer Patient 2.861.101.005.00 Parent 2.291.011.005.00 Physician 2.601.291.005.00 Nurse 2.221.071.004.00 Social Worker 2.30.991.004.00 BRIEF Global Executive Composite 48.6910.2733.0075.00 BSI total score 5.717.34.0033.00 FAD general functioning 6.041.021.837.25 Table 5. Regression of executive functions pred icting patient-report of self-care independence Variable B SEB R2 R2 Step 1 .27 Age*** 1.20.33.55 Income -.21.30-.10 Lung function .02.04.07 Step 2 .29.02 Global Executive Composite -.08.09-.14 ***p < .001 Table 6. Regression of family functioning predic ting patient-report of self-care independence Variable B SEB R2 R2 Step 1 .24 Age** 1.65.53.56 Income -.33.37-.15 Lung function .04.05.13 Step 2 .25.01 General family functioning -.53.99-.09 **p < .01

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56 Table 7. Regression of parental distress predicting patient-re port of self-care independence Variable B SEB R2 R2 Step 1 .24 Age** 1.65 .53 .56 Income -.33 .37 -.15 Lung function .04 .05 .13 Step 2 .25.01 Parental distress -.08 .14 -.09 **p < .01 Table 8. Regression of executive functions predicting parent-report of self-care independence Variable B SEB R2 R2 Step 1 .12 Age .91.49.35 Income -.50.35-.26 Lung function .00.04.02 Step 2 .18.06 Global Executive Composite -.14.10-.27 Table 9. Regression of family functioning predic ting parent-report of self-care independence Variable B SEB R2 R2 Step 1 .12 Age .91.49.35 Income -.50.35-.26 Lung function .00.04.02 Step 2 .12.00 General family functioning -.04.93-.01 Table 10. Regression of parental distress pred icting parent-report of self-care independence Variable B SEB R2 R2 Step 1 .12 Age .91 .49 .35 Income -.50 .35 -.26 Lung function .00 .04 .02 Step 2 .14.02 Parental distress -.11 .13 -.15

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57 Table 11. Regression of patient-reported self-care independence predicting the teams rating Variable B SEB R2 R2 Step 1 .59 Age*** .28 .04.81 Income .02 .04.07 Lung function*** .02 .02.42 Step 2 .59.00 Patient-reported self-care .01 .02.03 ***p < .001 Table 12. Regression of parent-reported self-car e independence predicting the teams rating Variable B SEB R2 R2 Step 1 .53 Age*** .34 .06.79 Income -.02 .04-.06 Lung function*** .02 .01.47 Step 2 .53.00 Parent-reported self-care ***p < .001 Table 13. Regression of patient-reported self -care independence predicting physician rating Variable B SEB R2 R2 Step 1 .59 Age*** .39 .06.80 Income .03 .05.06 Lung function** .02 .01.37 Step 2 .60.01 Patient-reported self-care -.02 .03-.10 **p < .01, *** p < .001 Table 14. Regression of parent-reported selfcare independence predic ting physician rating Variable B SEB R2 R2 Step 1 .45 Age*** .36 .09.68 Income .04 .06.09 Lung function** .02 .01.43 Step 2 .45.00 Parent-reported self-care -.02 .03-.09 **p < .01, *** p < .001

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58 Table 15. Regression of patient-reported self -care independence pred icting nurse rating Variable B SEB R2 R2 Step 1 .46 Age*** .27 .05.72 Income -.02 .04-.04 Lung function** .02 .01.42 Step 2 .46.00 Patient-reported self-care -.00 .02-.01 **p < .01, *** p < .001 Table 16. Regression of parent-reported selfcare independence predicting nurse rating Variable B SEB R2 R2 Step 1 .41 Age*** .32 .07.69 Income -.04 .05-.12 Lung function** .02 .01.48 Step 2 .41.00 Parent-reported self-care -.01 .03-.04 **p < .01, *** p < .001 Table 17. Regression of patient-rep orted self-care independence pr edicting social worker rating Variable B SEB R2 R2 Step 1 .49 Age*** .29 .05.76 Income -.00 .04-.01 Lung function** .01 .01.33 Step 2 .50.01 Patient-reported self-care .02 .02.12 **p < .01, *** p < .001 Table 18. Regression of parent-reported self-care independence predicting social worker rating Variable B SEB R2 R2 Step 1 .45 Age*** .33 .07.76 Income -.03 .05-.09 Lung function* .01 .01.34 Step 2 .47.02 Parent-reported self-care .03 .03.16 *p < .05, *** p < .001

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59 Table 19. Pearsons r correlation matrix of rating s of readiness to transfer Informant 1. 2. 3. 4. 5. 1. Patient --2. Parent .58*** --3. Physician .41** .18 --4. Nurse .18 .30+ .66*** --5. Social Worker .18 .03 .65*** .63*** --+p = .07, ** p < .01, *** p < .001 Table 20. Top ranked reasons for ratings of readiness to transfer Patient Parent Physician Nurse Social Worker 1st reason Age (81%) Age (70%) Emotional maturity (77%) Age (66%) Age (78%) 2nd reason Other (67%) Emotional maturity (52%) Age (59%) Health status (53%) Other (73%) 3rd reason Health status (60%) Other (50%) Health status (46%) Other (47%) Emotional maturity (47%) Table 21. Regression of knowledge predicting nurse rating Variable B SEB R2 R2 Step 1 .46 Age*** .27.05.72 Income -.02.04-.04 Lung function** .02.01.42 Step 2 .51 .05 Knowledge* .10.05.33 p < .05, ** p < .01, *** p < .001 Table 22. Pearson correlations betwee n psychosocial variables and ratings Family functioning Parental distressExecutive functions Patient rating .28 -.12 -.21 Parent rating .27 -.15 .13 Physician rating .31 .07 .11 Nurse rating .37* .34* .09 Social worker rating .30 .29 .17 p < .05

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60 Table 23. Regression of family functioning predicting nurse rating Variable B SEB R2 R2 Step 1 .41 Age*** .33.07.69 Income -.04.05-.12 Lung function** .02.01.48 Step 2 .50 .09 General family functioning* .31.13.32 p < .05, ** p < .01, *** p < .001

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61 CHAPTER 4 DISCUSSION Readiness to transfer is an important topic fo r children with chronic illnesses, particularly those with CF. The topic of transfer to adult clinic has been examined in a number of survey studies (e.g., Anderson et al., 2002; Flume et al., 2 001). To the authors knowledge, this is the first study to quantitatively exam ine variables related to readin ess to transfer, specifically demographic variables, psychosocial variable s, and self-care inde pendence. Self-care independence has been called the keystone to transition readiness (Betz, Redcay, & Tan, 2003). In order to test this th eory, this study first required the adaptation of an existing measure of self-care independence. Psychometric Properties of SCIS-SR This study set out to adapt a m easure of self -care independence for use with patients with cystic fibrosis. The measure was adapted from an existing parent-report measure of patients self-care independence. This study found mixed psychometric properties of the SCIS-SR. This measure demonstrated good internal consistency, as well as good test-re test reliability in patients in pediatric clinics over a period of four weeks. These results were similar to the adequate psychometric properties of the or iginal measure. However, the patient report of self-care independence demonstrated only a weak (but stil l significant) relationship with their knowledge of managing their disease. This finding was in contrast to the pr operties of the original parentreport version, that the SCIS was moderately rela ted to parents knowledge about CF (Patton et al., 2003). The discriminative validity of the SC IS was not supported by the comparison of the 50 pediatric patients to ten patients from adult clinics. The weak relationship between the SCIS-S R and knowledge about CF management may be due in part to differences between the me thods of measuring of knowledge in this study

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62 compared with the original validation of the SCIS. Specifically, this study used a multiplechoice measure of knowledge which asks genera l questions about treatments for CF. The original study of the SCIS used a structured interview to elicit information about the childs knowledge of their own regimen. While a mul tiple-choice knowledge questionnaire may be useful in quantifying a patients knowledge, a stru ctured interview most likely allowed for more personalized information. Patients knowledge of their own treatment regimen may be more strongly related to their current self-care behaviors, compared with knowledge about how to interpret symptoms and uses of different treatments. With regard to the lack of discriminative validity, reporting biases may partially account for the lack of differences between the pediatric and adult clinics. Anecdotally, patients in the pediatric clinic were quick to assume credit for aspects of their treatment regimen, whether they regularly completed for a treatment independently or they were beginning to take responsibility for that treatment. Patients also endorsed ta king responsibility for treatments which they reported were not part of their current regimen. Unfortunately, this study did not collect data regarding physicians prescriptions ; thus, patients endorsements of responsibility for particular treatments could not be compared to their actual regimen. In contra st to patients in the pediatric clinic, patients in the ad ult clinic were more likely to report that they skip a treatment, about which they also endorsed informing their doctor. Thus, patients in the pedi atric clinic may have inflated scores, while patients in the adult clinic may have deflated scores. This would make it less likely to find differen ces between clinics. These reporting differences have clinical implications for addressing self-care independence with families. For the adolescents who may be report doing more treatments than they are prescribed, it may be particularly important to eval uate their understanding of their

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63 prescribed regimen. Patient-provider miscommuni cation may contribute to their report of doing treatments which are not part of their current treatment regimen. Patients must report all treatments they are taking to their physician. It is important for the provider to clarify prescriptions with the patient and to allow even a young patient to be part of the process, through use of visual aids and encourag ing turn-taking during the conversation (Butz, Walker, Pulsifer, & Winkelstein, 2007). Not only were there differences in the reporti ng styles between patie nts in pediatric and adult clinics, there were also methodological challenge s which hindered support for discriminative validity for the self-care independ ence measure. Specifically, the small number of patients in each clinic setting and uneven groups could contri bute to the null findings. The patients were also collected at four sites, two of which included adult clinics. This recruitment of a sample of convenience results in site being a potentially confounding vari able. Future studies should compare self-care independe nce scores of patients in pedi atric and adult clinics at the same site. This would decrease the confounding effect of site. Age of the patient was also examined for additional construct validity of the self-care independence scale. Age was not related to self -care independence in this study, which contrasts previous results using the parent-report version of the SCIS. This may have been due in part to restriction of range of age due to the target sample of pre-adoles cents and adolescents. This age range was intentionally selected because another important aspect of this study was to examine variables related to readiness to transfer to adult clinic. Specifi cally, this study recruited patients from pediatric clinics ages 12 through 24, wh ereas Patton and colleagues (2003) focused on children ages four through 17. T hus, it appears that once a child or adolescents gets to certain age, there may be a ceiling effect using this m easure. This age may have been younger than the

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64 age of the participants of this study, as even the youngest partic ipants in this sample were reporting high levels of self-care independence. Patton and colleagues (2005) surveyed CF team members about the age at which 50% of childre n could perform the tasks on the SCIS. They found a range of responses from five to 13 year s; however, these estimates demonstrated poor concordance overall. Thus, the age at which these behaviors emerge is not well understood. The self-report version of the self-care inde pendence measure was adapted for use in this study based on an existing parent-report version. Thus, there are some limitations to using a measure with pre-adolescents and adolescents which was originally developed for parents of children with CF across nearly all developmental stages. In order to enhance this new measure for use with adolescents with cystic fibrosis, focus groups could be used to determine the selfcare behaviors and activities that are important to adolescents. However, given the infection control issues with pati ents with CF, alternatives to typica l focus groups would be preferable. For example, adolescents could participate in online focus groups or discuss their ideas during individual semi-structured cognitive interviews. It would be part icularly important to interview adolescents in order to better understand how se lf-care independence may or may not occur in the context of being more independent across multiple domains of their lives. Another limitation of measuri ng self-care independence was the lack of comparison to the individual patients prescribed treatment plan. As noted previously, patients prescriptions or treatment regimens were not measured or acc ounted for in this study. Thus, the self-care independence measure fails to take into account the individual diffe rences in treatments. Some patients and parents noted that ce rtain items on the measure did not apply to them. For example, a patient may be pancreatic sufficient and not require enzyme supplements. In addition, multiple forms of airway clearance are mentioned on the measure. Many patients now use the Vest,

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65 rather than the Flutter or Acapella. In addition, if a patient ha s been regularly prescribed the Vest, the patient may be unfamiliar with use of the Flutter. In addition some patients alternate chest physiotherapy with a therapist with using the Vest alone. These individual differences in prescription as compared to the questions on the self-care independence measure results in patients self-care independence score being penalized unduly. One way to address this limitation would be to score only the items that represent questions related to each patients prescribed treat ments. By dividing the number of treatments conducted independently by the tota l number of treatments, a percen t independent score could be obtained. This percent independe nt score could be useful in examining self-care independence across a number of patients who ha ve different treatment regimens. It would also be interesting to have a way of observing how many treatments were being endorsed when these treatments were not prescribed. These observations could be used as a measure of faking good or miscommunication about their treatment plan. A limitation of both the study and the measure is that the self-care independence measure describes only the patient and parents perception of the patients self-care independence. This study may have benefited from a measure of ad herence or daily recall method to compare the self-report self-care independen ce measure with other measures of activities during the day. Specifically, the Daily Phone Diary (DPD) is a 24-hour recall method which includes other activities and companions for every activity the adolescent does through out the day (Quittner & Opipari, 1994). Although the DPD is also base d on self-report, the unobtrusive nature of the measure might allow for more accurate repor ting. The DPD would allow for comparison treatments conducted by the patient alone with treatments conducted in the presence of the parent.

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66 In terms of future research using the self-care independence measure, the authors of the original parent-report version not ed that the SCIS may be usef ul in longitudinal studies to measure increasing responsibility and self-care independence over time (Patton et al., 2003). This would be an interesting application of th e measure, which could help researchers understand the natural progression of selfcare independence, as well as lead researchers to develop interventions to increase self-care behaviors. Patterns of self-care i ndependence may also be important, since adolescence is a particularly challenging and ever-changing time. Patients may increase their independence at tim es, but then require more assistance from parents when they sick or when they are stressed with final exam s. This increase and decrease in independence may be appropriate as the patient learns when to ask for help. Researchers would need to measure these life events in or der to better understand patterns of self-care independence. Another limitation of the self -care independence measure is the scale for responses. The current measures, both SCIS and SCIS-SR, elicit y es or no answers with regard to specific self-care behaviors. It would be interesting to pilot other sc ales in order to understand how adolescents gain partial independe nce for some behaviors rather than others. Another way to determine the growth of self-care independen ce would be to give ra nges of percent of responsibility for treatments, such as I am responsible for my nebulized antibiotics with choices ranging from to 25% of the time, to 50%, to 75%, and to 100% of the time. This would provide additional informa tion to allow researchers to compare which behaviors for which the patient is more or less responsible. An improved version of this self-care independe nce scale could be a useful tool to measure the patients perception of their own behaviors related to caring fo r their CF. In a recent study (Modi et al., in press), adherence was show n to drop around mid-adolescence as parents were

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67 providing less supervision and adoles cents were failing to take over th eir treatments. It would be interesting to understand how the adolescents perc eive this process of th e parent stepping back and increasing the expectations for their child. Similarly, an improved SCIS and SCIS-SR may allow for the researchers and clinicians to measure whether parents perceive that their adolescents are doing more of their treatments th an what they actually accomplish. Thus, it is critically important for health care providers to understand the developmen tal process of changes in responsibility for the pa tients treatment regimen. Patient and Parent Reports of Self-Care Independence The second aim of the study sought to examine the relationship between patient and parent report of self-care independence. Patients and parents showed moderate agreement about the patients self-care independen ce, which provided support for the hypothesis. Although the difference was not statistically significant, parents endorsed tw o more behaviors than patients did. This suggests that, on average, parents might perceive that the patient is doing more of their treatments independently than what is being done. Parents have been found to supervise adolescents less than younger a dolescents and pre-adolescents (Modi et al., in press). Unfortunately, adherence was also lower in the mid-adolescence age group. This suggests that parents may need to monitor adolescents as they increase their self-care independence. Adolescents may have primary responsibility fo r their treatments, but parents may need to continue to monitor the patie nts through this time period. Psychosocial Variables and Self-Care Independence The third aim of the study was to exam ine th e relationship between psychosocial variables and self-care independence. None of the vari ables (executive function, family functioning, or parental distress) were related to self-care independence. Wh ile these psychosocial variables have been shown to relate to adherence, meas ures of adherence do not necessarily indicate the

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68 person who is primarily responsible for implemen ting the treatment regimen. This null result may have been largely due to the difference be tween adherence and self-care independence. Adherence can be defined as the amount of trea tments performed divided by the prescription. Self-care independence, in this study, does not account for the pr escription, and is a description of how much the adolescent does on his or her own. Self-Care Independence and Ratings of Readiness to Transfer This study sought to exam ine the relationship between self-care independence and readiness to transfer, given the theoretical assump tion that more independen ce will be related to more readiness. This hypothesis was not supported. Specifically, self-c are independence did not account for any of the variance in ra tings of readiness to transfer from pediat ric to adult care. This finding was consistent across ratings of r eadiness to transfer by all the members of the medical team. The lack of corre lation between self-care independe nce and readiness to transfer may have been due in part to the limitations with this measure. For ex ample the restriction of range of self-care independence scores may have reduced the opport unity to observe a relationship. In addition the small sample size may have resu lted in less power to detect differences. Additionally, important aspects of self-care independence may be missing from the measure. For example, understanding insurance policies may be important for a patient who has been on their parents plan which only lasts until a certain age. All of the patients in the adult clinic were receiving Medicaid. Acquiring th is coverage may require a long waiting period around the same time that the patient may be transitioning to the adult clinic. Thus, the addition of questions about other indepe ndent health promoting behavior s might increase the association between self-care independence and readiness to transfer. Despite the lack of relationship between self -care independence and readiness to transfer, these analyses provided in teresting results. Demographic variables, specifically age and disease

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69 severity, were associated with the medical team s ratings of readiness to transfer. These variables accounted for about 60% of varian ce, which provides empirical support for the qualitative results from the ranked reasons for thei r ratings of readiness to transfer. Despite the small sample size, age and health status accounte d for a substantial amount of the variance in readiness to transfer. The medical team genera lly rated older and healthier patients as more ready to transfer to adult care. This is the first study to empi rically support this idea which has been described in the literature in studies involving anecdotal evid ence and general practice survey results. Age is cited as the most common reason that a patient was transferred to the adult clinic (Anderson et al., 2002; Flume et al., 2001). This study provides empirical s upport that age of the patient in the pediatric clinic influences all me mbers of the CF teams rating of readiness to transfer. Age may be a proxy for other factors, such as cognitive development or emotional maturity. Emotional maturity was a reason for ratings of readiness by the parent and social worker, and the top reason for physicians. The age at which a patient begins to attend adult clinic may be flexible or rigid. Rigidity of the age of transfer is particularly true for inpatient units. If a patient who is 18 years old, and is gene rally seen in the pediatric clinic, goes to the emergency room for care, this patient will likely be hospitalized in the adult unit. This inhospital transition may be more stressful for the patient, family, and pediatric team (Parker, 2007, p. 427). If age of transfer to adult care is set and infl exible, there are a number of programs to prepare patients in advance, which have support from patient satisfaction (Craig, Towns, & Bibby, 2007). Often times these studies ar e case descriptions where the standard of care includes transition preparation, like joint c linics between pediatric and adult providers, without comparison to control groups.

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70 In a survey of CF center directors, disease se verity was also described as a criterion for deciding when to transfer patients (Flume et al., 2001). Physicia ns have described hesitation to transfer patients who are particularly ill. This study statistically demonstrated this relationship. While it is understandable that a CF exacerbation is not an ideal time for transfer to adult care, patients who become more ill may benefit from adult care as they become older. Other medical issues, such as CF-related diabet es and consideration of transp lant, might be more common in adult settings. Thus, it may be im portant to anticipate these issues when discussing the topic of transition with patients and parent s. On the other hand, patients may be more hesitant to transfer when they are sick. They may also benefit from remaining with a medical team who is familiar with their history, personal and medical, at points of important d ecision making and treatment. In order to more thoroughly understand read iness to transfer, correlations among the psychosocial variables and ratings of readiness were examine d. A moderate correlation was found between knowledge and the medical teams ra tings of readiness to transfer. Only for nurses, knowledge was associated with readines s to transfer, above a nd beyond the contribution of age and health status. Nurses may have more insight into the patien ts level of knowledge related to managing their CF, due in part to the role of nurses wh ich often includes CF education. They may perceive that higher knowledge is relate d to more readiness to transfer. One possible mechanism for this relationship may be thr ough adherence. This study found that poor adherence was noted as a reason for lower rati ngs of readiness to transfer. Anthony and colleagues (1999) found that increase knowledge wa s related to more adherence to enzymes. Thus, if knowledge is related to adherence and ad herence is a reason for readiness, nurses may be interpreting that knowledge is related to readiness.

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71 Patients and physicians noted lack of knowledge about disease as a reason for being less ready to transfer care. Although knowledge was not related to patient-report self-care independence, the perceived knowledge of the patie nt was related to how the medical team rated the patients readiness with more perceived knowle dge being related to incr eased readiness. The medical team might estimate the patients know ledge in a number of ways. Adherence may suggest knowledge, as a patient who performs their treatments is assumed to have an understanding of what they are pr escribed to do and reasons why. Patients who talk more during their visit, describe their treatment regimen in de tail, or ask more questions may be perceived as more knowledgeable. Knowledge can be measured directly by assessment, such as the multiplechoice questionnaire used in this study. In addition, skills tests conducted by a nurse may be informative in determining the patients understa nding and ability to correctly use medications and equipment. Use of knowledge questionnaire s and skills testing may directly inform treatment. Treatment may include specific re mediation of knowledge deficits. Numerous nursing education tools are ava ilable to address particular issues. For example, the STARBRIGHT program Fitting CF in Your Life Everyday has been shown to significantly improve overall knowledge (Davis, Quittner, Stack, & Yang, 2004). Although knowledge was only weakly related to self-care i ndependence, it was related to th e nurse ratings of readiness. Knowledge has been described as a precursor to behavior change, particular in terms of adherence in pediatric patients with cystic fibr osis (Anthony et al., 1999; Ie vers et al., 1999). The examination of the psychosocial variab les and ratings of r eadiness to transfer revealed a lack of association for most informan ts. This may be due in part to the peripheral nature of family functioning and parental distress While these variables are likely to influence the patient in many ways, they may have an indir ect impact on readiness to transfer. Statistical

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72 modeling techniques, which require large samples, may be able to detect this impact and pathways through other variables. The generality of the psychosocial va riables may be another reason for the lack of association with readiness to transfer. For example, family functioning is comprised of a number of subscales encomp assing topics like comm unication, affect, and behavioral control. The analyses in this study examined the general family functioning composite. The family functioning measure incl udes general items, not specifically related to transferring to adult clinic. Sc ores on this measure may indicate relatively good or bad family functioning, but the scores do not provide inform ation regarding communica tion about transition. Executive functions are directly related to the pa tient, but were not related to the ratings of readiness to transfer. This may have been due in part to the use of the Global Executive Composite rather than specific behaviors. This composite is comprised of a number of subscales, including metacognition behaviors (e.g., working memory, planning, and task completion) and behavioral regul ation behaviors (e.g., shifting a ttention, emotional control). Specific subscales, such as task completion, that relate more dire ctly to medical behaviors may relate to readiness to transfer. Due to the small sample size and lack of specific hypotheses, subscales of family functioning and ex ecutive functions were not evaluated. Correlations between psychosocia l variables and the nurse ra ting of readiness were found for parental distress and family functioning. Only family functioning was associated with the nurse rating above and beyond the contribution of ag e and health status. This finding suggested that worse family functioning was related to more readiness. Nurses may be aware of disagreements between parents and adolescents as the adolescents may be seeking more independence. Families may need to communicate and collaborate less if the adolescent is successfully preparing to transfer to adult clinic. The role of the family would be less centrally

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73 involved once the patient has transf erred. In that sense, this fi nding may not reflect pathological family functioning but perhaps reflect a change in roles. Future studies should examine whether nurses ratings of readiness to transfer are influenced by general family dysfunction or by specific transitionor CF-related disagreements Nurses may be exposed to more family interactions due to the increased time they spend with families in clinic, in hospital, and during phone consultations. Adolescents w ho are having more strained in teractions with their parents may also be striving for increased independence. Despite the previous potential explanation for this finding, it is in contrast to li terature regarding better family f unctioning and better adherence. In their reasons for ratings of readiness, members of the medical team noted that adherence was important in their decision. This reason wa s given mostly in cases of low ratings of readiness, such that poor adhere nce was related to less readines s. Future studies examining readiness to transfer would bene fit from measuring adherence, in order to quantitatively test the role of adherence in readiness to transfer. If adherence is related to succ essful transfer to adult care, interventions can be used to improve d adherence through ch anging behaviors and improving family functioning. Clinically, the rating of readiness to transfer revealed interesting agreement, as well as discrepancies, among the informants. Although th e ratings of readiness to transfer were correlated between patients and parents, patien ts and physicians, and among the medical team, physicians and parents ratings we re not related. This suggests that increased communication between parents and team members may be necessa ry to prepare parents for transition. The nurse and the parent appear to ag ree, which suggests that the nurse or other member of the team may have a sense of the parents comfort with transition. As a small number of patients and parents continue to be hesitant to leave due to the positive re lationship with pediatric team, it

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74 may be important to make additional efforts for clear communication and preparation in advance with some families. These issues of communication and relationships between families and teams are appropriate referrals for pediatric psychologists. Consultation and treatment by a pediatric psychologist may promote improved communication among and between the medical team and family members, through spending ti me evaluating concerns about transition and developing specific interventions to address those concerns. Limitations A num ber of limitations of the study have been noted previously, such as the lack of prescription and treatment regimen information a nd the lack of measures of adherence. The measure of self-care independence was not devel oped in this study, but rather was adapted from an existing parent-report vers ion. The limited age group resulte d in restriction of range, particularly for the self-care independence measure. The small sample size presents a number of limitations. In particular the larg e number of analyses run may be susceptible to type I error. The small sample size may have suppressed the stre ngth of some of the relationships and would not have allowed for the examination of a mediator model, had the assumptions been met. The low number of patients recruited from the adu lt clinic may have hindered the possibility of detecting discriminative validity. Additionally, th e generalizability of the findings is limited by the small sample size and the demographic ch aracteristics of the sample, such as the predominantly Caucasian ethnicity of the sample. Due to the cross-sectio nal nature of the study, regressions cannot be used to pred ict readiness to transfer. The va riables of interest can only be described as correlates of readiness. A longit udinal study would allow for the examination of the ability of these variables to pr edict readiness to transfer, as well as successful transition.

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75 Strengths To the authors knowledge, this was the first study to exam in e correlates of readiness to transfer to adult care in cystic fibrosis. This study provides statistical ev idence that older age and better health are related to being more ready to transfer according to members of the medical team. This study was conducted across four Cys tic Fibrosis Foundation accredited centers in the mid-West, South, and SouthEast parts of the countr y. Although some of the analyses examined variables from a single informant, the most inte resting findings included demographic variables and multiple informants, which reduced bias. This study was well received by the participating centers and was described as a timely investiga tion. As patients are livin g longer, CF teams are dedicated to the best care for the patients and part icipating in research to inform their practice. Future Directions Although som e reasons for readine ss to transfer to adult care were identified for members of the medical team, less is known about the reason s for patient and parents ratings of readiness to transfer. Flume and colleagues (2001) found that a close relationship with the pediatric team and hesitation toward the adult team were barriers to transition. The curre nt study replicated this qualitative finding. Future stud ies should seek to better understa nding variables that influence the patients and parents readin ess. In addition rating of readiness should be compared to successful transition in the future. Patients and parents frequently noted liking the pediatric team as a reason for not being ready to transfer to adult cente rs. This can be addressed by th e pediatric team providing support for the family to meet and become comfortable w ith the adult team. This may require different approaches or models of transition, such as joint clinics between pediatric and adult staff. Such programs exist and have demonstrated some positive results in terms of satisfaction. Future studies should prospectively examine the impact of transition programs, such as joint clinics, on

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76 the successful transiti on of patients. A number of tran sition programs have been developed based on developmental and disease-specific ta sks (e.g., Knauth, Verstappen, Reiss, & Webb, 2006). For example, a program for adolescents with cardiac conditions consists of a curriculum addressing developmental issues, like pregnancy and career planning, as well as disease-specific tasks, like monitoring symptoms and accessing care. No outcome research studies exist regarding transition in pediatric chronic illness, particularly in CF (Parker, 2007). One study describes the usefulness of a cas e manager in an anecdotal case study (Rearick, 2007). It may also be important to compare joint clinics with standard care in order to evaluate whether the benefits outweigh the effort and costs. This an alysis of cost-benefit is difficult to quantify as many CF team members are dedicated to the succ ess of individual patients. Thus, one more successful transition experience may be worth the extra effort. Asking the parents and patients for ratings of readiness and reasons for their ratings in advance may help providers identify the 10% of patients who are especially hesitant to leave the pediatric team. Outcome research regarding successful tran sition has been conducted in the area of pediatric cardiac disease. In one study, successful transition was de fined as at least one visit to the adult clinic in the past y ear (Reid et al., 2004). Correlate s of successful transition include living closer to the adult clinic, more pediatric car diac surgeries, and older age at time of transfer of care. Successful transition wa s not related to family income or whether the patient lived with their parents. Similarly, income was not related to ratings of readiness to transfer. This study may serve as an example of designing a study to evaluate successful transition in cystic fibrosis. Transition continues to be an emotionally laden topic for patients, families, and providers. Future studies should continue to examine this emotional component of health care, as well as

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77 evaluate the process of successfu lly transitioning patients with cyst ic fibrosis from pediatric to adult centers.

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78 APPENDIX A SELF-CARE INDEPENDENCE SC ALE-SEL F REPORT FORM Directions: For each of the following self-c are behaviors, please circle yes if you have learned the behavior or "no" if you have not learned the behavior. "Learning a behavior" is defined as the stage when you are able to independently initi ate or perform the behavior without receiving a prompt or requiring information to perform th e behavior correctly. When evaluating items, please disregard issues of noncomplian ce and inconsistent performance. Do you or can you: Diet and High Calorie Nutritional Supplements: 1. Monitor changes in weight? Yes No 2. Explain how the body uses food as energy? Yes No 3. Make changes in diet to adjust for weight loss? Yes No 4. Pick out high calorie foods? Yes No 5. Remember the number of meals and snack to eat in a day? Yes No 6. Know to eat high fat/high calorie foods? Yes No 7. Eat recommended amounts of foods? Yes No 8. Name high calorie nutritional supplements? Yes No 9. Know when to take high calorie nutritional supplements? Yes No 10. Know how many nutritional supplements to take each day? Yes No Enzymes: 11. Know when to take enzymes? Yes No 12. Know the brand name(s) of the enzymes prescribed? Yes No 13. Know how many enzymes to take with meals and snacks? Yes No 14. Take enzymes in capsule form? Yes No 15. Explain what enzymes do in the body? Yes No Medications and Vitamins: 16. Name what antibiotics are prescribed? Yes No 17. Know when to take antibiotics? Yes No 18. Take antibiotics as prescribed? Yes No 19. Explain what antibiotics do in the body? Yes No 20. Learn the types of antibiotics prescribed? Yes No 21. Use nasal sprays? Yes No 22. Name the nasal sprays prescribed? Yes No

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79 23. Know when to use nasal sprays? Yes No 24. Name the vitamins prescribed? Yes No 25. Remember the dose of each vitamin? Yes No 26. Swallow vitamins with water? Yes No 27. Remember to take vitamins? Yes No 28. Know when to take vitamins each day? Yes No Lung Clearance Behaviors: 29. Enlist the help of another to perform chest physiotherapy? Yes No 30. Explain why to perform chest physiotherapy? Yes No 31. Know how many times each day to perform chest physiotherapy? Yes No 32. Know how long to perform each treatment? Yes No 33. Name prescribed medications to be taken before chest physiotherapy? Yes No 34. Know how many times each day to use the Flutter? Yes No 35. Use a Therapy vest? Yes No 36. Know when to use th e therapy vest? Yes No 37. Know how many times each day to use the therapy vest? Yes No Aerosols: 38. Use an aerosol? Yes No 39. Name prescribed aerosols? Yes No 40. Know when to perform each aerosol treatment? Yes No Medical Care and General Knowledge: 41. State the name of your Pulmonologist. Yes No 42. Recognize the symptoms of an infecti on and tell someone about it. Yes No 43. Talk to others about Cystic Fibrosis. Yes No 44. Tell teachers about school absences due to clinic appointments or infection. Yes No

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80 APPENDIX B RATING OF READINESS TO TRANSFER ID of patient: Date: _____/_____/______ 1. How ready is _______________ to transfer from the pediatric to adult CF clinic? Not at all ready Somewhat ready Could transfer with hesitation Ready with no concerns Has been ready 1 2 3 4 5 2. Please rank the top 3 reasons for choosing your rating above: ___ Age ___ Health status (e.g., disease severity, other medical issues) ___ Emotional maturity ___ Issues related to current functioning ___ Developmental issues (e.g., reproduction, discussing drug and alcohol use) ___ Other: ________________

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81 LIST OF REFERENCES Abbott, J., Dodd, M., Gee, L., & Webb, K. (2001) W ays of coping with cystic fibrosis: implications for treatment adherence. Disability & Rehabilitation, 23(8), 315-324. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Anderson, B. J., Auslander, W. F., Jung, K. C., Miller, J. P., & Santiago, J. V. (1990). Assessing family sharing of di abetes responsibilities. Journal of Pedi atric Psychology, 15, 477-492. Anderson, D. L., Flume, P. A., Hardy, K. K., & Gray, S. (2002). Transition programs in cystic fibrosis centers: Percep tions of patients. Pediatric Pulmonology, 33, 327-331. Anderson, B., Ho, J., Brackett, J., Finkelstein, D ., & Laffel, L. (1997). Parental involvement in diabetes management tasks: relationships to blood glucose monitoring adherence and metabolic control in young adolescents w ith insulin-dependent diabetes mellitus. Journal of Pediatrics, 130 (2), 257-265. Anthony, H., Paxton, S., Bines, J., & Phelan, P. ( 1999). Psychosocial predic tors of adherence to nutritional recommendations and growth outco mes in children with cystic fibrosis. Journal of Psychosomatic Research, 47 (6), 623-634. Bagner, D. M., Williams, L. B., Geffken, G. R., Silv erstein, J. H., & Storch, E. A. (2007). Type 1 diabetes in youth: The relationship be tween adherence and executive functioning. Children's Health Care, 36 (2), 169-179. Baron, R. M. & Kenny, D. A. (1986). The modera tor-mediator variable distinction in social psychological research: Concep tual, strategic, and stat istical considerations. Journal of Personality and Social Psychology, 51 (6), 1173-1182. Betz, C. L. (2000). California healthy and ready to work transition health care guide: Developmental guidelines for teaching hea lth care self-care skills to children. Issues in Comprehensive Pediatric Nursing, 23, 203-244. Betz, C. L., Redcay, G., & Tan, S. (2003). Se lf-reported health care self-care needs of transition-age youth: a pilot study. Issues in Comprehensive Pediatric Nursing, 26, 159181. Bihun, J. T., Wamboldt, M. Z., Gavin, L. A., & Wambolt, F. S. (2002). Can the Family Assessment Device (FAD) be used with school aged children? Family Process, 41 (4), 723-731. Blum, R. W. (1995). Transition to a dult health care: Setting the stage. Journal of Adolescent Health, 17(1), 3-5.

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87 Riordan, J. R., Rommens, J. M., Ke rem, B., Alon, N., Rozmahel, R ., Grzelczak, Z., Zielenski, J., Lok, S., Plavsic, N., Chou, J. L., et al. (1989). Identification of the cystic fibrosis gene: Cloning and characterization of complementary DNA. Science, 245 (4922), 1066-1073. Roisman, G. I., Masten, A. S., Co atsworth, J. D., & Tellegen, A. (2004). Salient and emerging tasks in the transition to adulthood. Child Development, 75 (1), 123-133. Russell, M.T., Reinbold, J., & Maltby, H.J. (1996). Transferring to adult health care: experiences of adolescents with cystic fibrosis. Journal of Pediatric Nursing, 11 (4), 262268. Scal, P. (2002). Transition for youth with chronic conditions: Primary care physicians approaches. Pediatrics, 110(6), 1315-1321. Scal, P. & Ireland, M. (2005). Addressing trans ition to adult health care for adolescents with special health care needs. Pediatrics,115 (6), 1607-1612. Schidlow, D. V. (2002). Transition in cy stic fibrosis: Much ado about nothing? A pediatricians view. Pediatric Pulmonology, 33, 325-326. Schidlow, D. V. & Fiel, S. B. (1990). Life beyond pediatrics: Transition of chronically ill adolescents from pediatric to adult health care systems. Medical Clinics of North America, 74(5), 1113-1120. Slater, S. K., Quittner, A. L., Thompson, S. M ., & Stack, C. M. (2003). The relationship between stress and depression in primary careg ivers of children with cystic fibrosis [Abstract]. Pediatric Pulmonology, Suppl. 25, 368. Stark, L. J., Mackner, L. M., Patton, S. R., & Act on, J. D. (2003). Cystic fibrosis. In M. C. Roberts (Ed.), Handbook of Pediatric Psychology (3rd ed., pp. 286-303). New York, NY: Guilford Press. Taylor, L., Tsang, A., & Drabble, A. (2006). Transition of tr ansplant patients with cystic fibrosis to adult care: todays challenges. Progress in transplantation, 16 (4), 329-334. Thompson, R. J., Jr., Hodges, K., & Hamlett, K. W. (1990). A matched comparison of adjustment in children with cystic fibrosis and psychiatrically referred and nonreferred children. Journal of Pediatric Psychology 15 (6), 745-759. Vega-Briceno, L. E., Guiraldes, C. E., & Sanchez, D. I. (2006). Cystic fibrosis: Facing patient transition from the pediatrician to the internist. Revista medica de Chile, 134 (3), 365371. Viner, R. (2001). Barriers a nd good practice in transition from paediatric to adult care. Journal of the Royal Society of Medicine, 94 (40), 2-4.

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88 Wallander, Thompson, & Alriksson-Schmidt. (2003) Psychosocial adjustment of children with chronic physical conditions. In M. C. Roberts (Ed.), Handbook of Pediatric Psychology (3rd ed., pp. 141-158). New Yor k, NY: Guilford Press. Webb, A.K., Jones, A.W., & Dodd, M.E. (2001). Transition from paediatric to adult care: Problems that arise in the adu lt cystic fibrosis clinic. Journal of the Royal Society of Medicine, 94 (40), 8-11. Welsh, M. J. & Smith, A. E. (1995). Cystic fibrosis. Scientific American, 273, 52-59. Westwood, A. T. R., Henley, L. D., & Willcox, P. (1999). Transition from paediatric to adult care for persons with cystic fibrosis : Patient and parent perspectives. Journal of Paediatics and Child Health, 35, 442-445. While, A., Forbes, A., Ullman, R., Lewis, S., Math es, L., & Griffiths, P. (2004). Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child: Care, Health & Development, 30 (5), 439-452. Williams, P. D., Williams, A. R ., Hanson, S., Graff, C., Ridder, L., Curry, H., Liebergen, A., & Karlin-Setter, R. (1999). Maternal mood, fa mily functioning, and perceptions of social support, self-esteem, and mood among si blings of chronically ill children. Childrens Health Care, 28 (4), 297-310. Wysocki, T., Meinhold, P. M., Taylor, A., H ough, B. S., Barnard, M. U., Clarke, W. L., Bellando, B. J., & Bourgeois, M. J. (1996). Psychometric properties and normative data for the parent version of the diabetes independence survey. Diabetes Education, 22, 587591. Zack, J., Jacobs, C.P., Keenan, P.M., Harney, K., Woods, E.R., Colin, A.A., & Emans, S.J. (2003). Perspectives of patients with cystic fibrosis on preventative counseling and transition to adult care. Pediatric Pulmonology, 36, 376-383.

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89 BIOGRAPHICAL SKETCH Kristen M arciel received her bachelors degree in child development at Vanderbilt University in 2001 and her masters degree in clinic al psychology at the Univ ersity of Florida in 2004. She was awarded the Doctor of Philosophy de gree of clinical psychology in May 2008 and plans to pursue a career in pediatric psychology. Her primary resear ch interest is the psychological impact of chronic illnesses, such as cystic fibrosis, on children and their families.