<%BANNER%>

Does Quality of Life Differ by Gender in Pediatric Implantable Cardioverter Defibrillator Patients? A Multi-Site Pilot Study

Permanent Link: http://ufdc.ufl.edu/UFE0022034/00001

Material Information

Title: Does Quality of Life Differ by Gender in Pediatric Implantable Cardioverter Defibrillator Patients? A Multi-Site Pilot Study
Physical Description: 1 online resource (44 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: icd, pediatric, quality
Clinical and Health Psychology -- Dissertations, Academic -- UF
Genre: Psychology thesis, M.S.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: The implantable cardioverter defibrillator (ICD) has continually outperformed medications in numerous clinical trials for the treatment of lethal ventricular arrhythmias. Psychosocial research on ICD patients has shown that quality of life is strongly associated with measures of anxiety, depression, and family functioning. Young patients, women, and patients receiving an ICD shock have been identified as risk groups for increased adjustment difficulties. Extant research has indicated that younger patients have a greater probability of receiving ICD shock but possible gender differences have not been examined. Recent literature has highlighted psychological consequences of an ICD that are unique to adult women, specifically focusing on factors such as sexuality, femininity, caretaking abilities, and body image satisfaction. The purpose of this project was to examine possible differences between male and female pediatric ICD patients across cognitive, social, physical and psychosocial domains. The participants were 20 patients (13 male - Mean age = 13.08, SD = 4.13, and 7 female - Mean age = 12.86, SD = 2.73) who had been implanted with an ICD prior to participation. Patients were recruited at the Baylor University Medical Center and the University of Florida Health Science Center. Participants completed psychosocial batteries during a routine office visit. The patient packets included measures in the domains of quality of life, social and cognitive functioning. ANOVAs were completed to test for differences and results indicated that girls reported significantly lower scores on the PedsQL total scale quality of life measure (F(19) = 5.70, p = .028), the PedsQL physical health scale (F(19) = 7.57, p = .013), and the PedsQL cardiac health scale (F(19) = 7.63, p = .013) than their male counterparts. Comparisons across social and cognitive domains were not significant. The current study indicates that the gender differences in QOL that have been demonstrated in the adult ICD literature were extended in the pediatric ICD sample. The clinical implication of these findings suggests that clinicians may want to consider gender differences into their treatment of not only adult, but pediatric ICD patients. Further research should focus on identifying efficacious gender-specific psychosocial interventions for female ICD patients of all ages.
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 (M.S.)--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: UFE0022034:00001

Permanent Link: http://ufdc.ufl.edu/UFE0022034/00001

Material Information

Title: Does Quality of Life Differ by Gender in Pediatric Implantable Cardioverter Defibrillator Patients? A Multi-Site Pilot Study
Physical Description: 1 online resource (44 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: icd, pediatric, quality
Clinical and Health Psychology -- Dissertations, Academic -- UF
Genre: Psychology thesis, M.S.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: The implantable cardioverter defibrillator (ICD) has continually outperformed medications in numerous clinical trials for the treatment of lethal ventricular arrhythmias. Psychosocial research on ICD patients has shown that quality of life is strongly associated with measures of anxiety, depression, and family functioning. Young patients, women, and patients receiving an ICD shock have been identified as risk groups for increased adjustment difficulties. Extant research has indicated that younger patients have a greater probability of receiving ICD shock but possible gender differences have not been examined. Recent literature has highlighted psychological consequences of an ICD that are unique to adult women, specifically focusing on factors such as sexuality, femininity, caretaking abilities, and body image satisfaction. The purpose of this project was to examine possible differences between male and female pediatric ICD patients across cognitive, social, physical and psychosocial domains. The participants were 20 patients (13 male - Mean age = 13.08, SD = 4.13, and 7 female - Mean age = 12.86, SD = 2.73) who had been implanted with an ICD prior to participation. Patients were recruited at the Baylor University Medical Center and the University of Florida Health Science Center. Participants completed psychosocial batteries during a routine office visit. The patient packets included measures in the domains of quality of life, social and cognitive functioning. ANOVAs were completed to test for differences and results indicated that girls reported significantly lower scores on the PedsQL total scale quality of life measure (F(19) = 5.70, p = .028), the PedsQL physical health scale (F(19) = 7.57, p = .013), and the PedsQL cardiac health scale (F(19) = 7.63, p = .013) than their male counterparts. Comparisons across social and cognitive domains were not significant. The current study indicates that the gender differences in QOL that have been demonstrated in the adult ICD literature were extended in the pediatric ICD sample. The clinical implication of these findings suggests that clinicians may want to consider gender differences into their treatment of not only adult, but pediatric ICD patients. Further research should focus on identifying efficacious gender-specific psychosocial interventions for female ICD patients of all ages.
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 (M.S.)--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: UFE0022034:00001


This item has the following downloads:


Full Text

PAGE 1

DOES QUALITY OF LIFE DIFFER BY GENDER IN PEDIATRIC IMPLANTABLE CARDIOVERTER DEFIBRILLATOR PATIEN TS? A MULTI-SITE PILOT STUDY By JAY B. ST. AMANT A THESIS PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE UNIVERSITY OF FLORIDA 2008 1

PAGE 2

2008 Jay B. St. Amant 2

PAGE 3

To my late father, Percy Jay St. Amant, Jr., for inspiring me to never give up. 3

PAGE 4

ACKNOWLEDGMENTS I would like to acknowledge Sa muel Sears, Ph.D., David Janicke, Ph.D., Bryan Cannon, M.D., Randall Bryant, M.D., Sharon Redfearn, A.R. N.P., and Lauren Vazquez, M.S., without whom this project would not have been possible. I would also like to thank my beautiful wife, Amy, without whom my continued happiness and sanity would not have been possible. 4

PAGE 5

TABLE OF CONTENTS page ACKNOWLEDGMENTS...............................................................................................................4 LIST OF TABLES................................................................................................................. ..........7 ABSTRACT.....................................................................................................................................8 CHAPTER 1 INTRODUCTION................................................................................................................. .10 Background.............................................................................................................................10 Contributing Factors to QOL in Pediatric ICD Patients.........................................................11 Psychosocial Adjustment.................................................................................................11 Device Acceptance..........................................................................................................13 Lead Fractures, Frequency and Appropriateness of Shocks...........................................13 QOL of Female ICD Patients.................................................................................................14 Current Study..........................................................................................................................15 2 METHODS...................................................................................................................... .......16 Participants.............................................................................................................................16 Procedure................................................................................................................................16 Measures.................................................................................................................................17 Demographics..................................................................................................................17 Medical Severity..............................................................................................................17 Questionnaires.................................................................................................................18 Child questionnaires.................................................................................................18 Parent questionnaires................................................................................................20 Statistical Analyses........................................................................................................... ......21 3 RESULTS...................................................................................................................... .........23 Demographics of Participants.................................................................................................23 Effect of Gender on QOL.......................................................................................................2 3 Relationship between Patient Self-Reports and Parent-Observed Reports on QOL and Cognitive Appraisal of the ICD..........................................................................................24 Effect of Medical Severity on QOL........................................................................................24 Comparison of Social Functioning.........................................................................................25 4 DISCUSSION................................................................................................................... ......31 Limitations.................................................................................................................... ..........34 Implications and Future Research..........................................................................................35 5

PAGE 6

APPENDIX....................................................................................................................................37 LIST OF REFERENCES...............................................................................................................40 BIOGRAPHICAL SKETCH.........................................................................................................44 6

PAGE 7

LIST OF TABLES Table page 1. Participant Demographic Data............................................................................................... ...26 2. Quality of Life Means and Standard Deviations by Gender.....................................................27 3. One-way ANOVA of Gender on Quality of Life.....................................................................28 4. QOL and FPAS Means and Standard Deviatio ns by Patient Report and Parent Report.........29 5. Paired-Sample t-tests of PedsQL and FPA S Scores between Patient Report and Parent Report.................................................................................................................................30 7

PAGE 8

Abstract of Thesis Presen ted to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Master of Science DOES QUALITY OF LIFE DIFFER BY GENDER IN PEDIATRIC IMPLANTABLE CARDIOVERTER DEFIBRILLATOR PATIEN TS? A MULTI-SITE PILOT STUDY By Jay B. St. Amant May 2008 Chair: David M. Janicke Major: Psychology Clinical and Health Psychology The implantable cardioverter defibrillator (IC D) has continually out performed medications in numerous clinical trials for the treatment of lethal ventricular arrhythmias. Psychosocial research on ICD patients has shown that quality of life is strongly associated with measures of anxiety, depression, and family functioning. Young patients, wome n, and patients receiving an ICD shock have been identified as risk groups for increased adjustment difficulties. Extant research has indicated that younger patients have a greater probability of receiving ICD shock but possible gender differences ha ve not been examined. Recent literature ha s highlighted psychological consequences of an ICD that are unique to adult women, specifically focusing on factors such as sexuality, fe mininity, caretaking abilities, and body image satisfaction. The purpose of this project was to examine po ssible differences between male and female pediatric ICD patients across cognitive, soci al, physical and psychosocial domains. The participants were 20 patient s (13 male Mean age = 13.08, SD = 4.13, and 7 female Mean age = 12.86, SD = 2.73) who had been implanted with an IC D prior to participation. Patients were recruited at the Baylor University Medical Center and the University of Florida Health Science Center. Participants completed psychosocial batteries during a routine office visit. 8

PAGE 9

The patient packets included measures in th e domains of quality of life, social and cognitive functioning. ANOVAs were completed to test for differen ces and results indicated that girls reported significantly lower scores on the PedsQL total scale quality of life measure, F (1,19) = 5.70, p = .028, the PedsQL physical health scale, F (1,19) = 7.57, p = .013, and the PedsQL cardiac health scale, F (1,19) = 7.63, p = .013, than their male counterparts. Comparisons across social and cognitiv e domains were not significant. The current study indicates th at the gender differences in QOL that have been demonstrated in the adult ICD literature were extended in the pediatric ICD sample. The clinical implication of these findings suggests that clinicians may want to consider gender differences in their treatment of not only adult, but pediatric ICD patients. Further research should focus on identifying efficacious gender-specific psychosocial interventions for female ICD patients of all ages. 9

PAGE 10

CHAPTER 1 INTRODUCTION Background According to the American Heart Association (2007), cardiovascular disease is the number one cause of death in the United States. Sudde n cardiac death due to ventricular arrhythmias kills approximately 300,000 to 350,000 people every ye ar (Myerburg & Castellanos, 2006). The implantable cardioverter defibrilla tor (ICD) has continually outperformed medications in clinical trials (DiMarco, 2003; Buxton et al., 1999; Bardy et al., 2005; Moss et al., 1996), and remains the treatment of choice for these potentially life-threatening ventricular arrhythmias. While the majority of ICD recipients are adu lts, children are frequently indicated for ICD implantation due to some form of congenital he art disease. In 2000, ove r 25,000 operations were performed for congenital heart disease on pati ents under age 20 (American Heart Association, 2006). Some of those surgeries likely involved implantation of an ICD. The ICD has shown success in decreasing mortality rates in pediatric cases of ICD recipients (Chatrath et al., 2002; Stefanelli et al., 2002). These pediatric ICD r ecipients are at a great er risk for device complications due to patient growth and incr eased physical activity (C ooper et al., 2003). Further, the pediatric patient will typically be a long-term healthcare consumer, given their younger age at problem onset. Incr eased attention to individual needs of pediatric patients is largely warranted to improve hea lth outcomes of young ICD recipients. The biopsychosocial model proposes that phys ical and psychological factors combine to produce health outcomes (Engel, 1977). With this in mind, physicians are increasingly encouraged to treat the whole patient, using a ho listic approach to treatment. The application of this multi-dimensional approach to health outcomes is frequently referred to as Quality of Life (Sears et al., 2002). Res earch on health-related quality of life (QOL) has increased over 10

PAGE 11

the past two decades. Going beyond mortality and morbidity, QOL measures typically focus on broad domains of functioning, such as social, physical, academic, and psychological well-being. While quality of life (QOL) research exists in adult ICD patients th at shows a superior outcome when compared to anti-arrhythmic medi cations (Burke et al., 2003) (Herbst et al., 1999), extensive research regarding pediatric ICD patients does not exist. In fact, there is a paucity of research to date on psychosocial func tioning of pediatric ICD patients. Thus, turning to pediatric chronic illness litera ture can provide some insight in to potential relationships that might exist in pediatric ICD populations. Epidem iological studies suggest that approximately one-third of children with chronic illness expe rience some degree of psychosocial maladjustment (Cadman et al., 1987; Pless & Roghmann, 1971). More specifically, research by Varni and colleagues (2007) indicated that children with heart disease, which may have included some patients with ICDs, report significantly lower health-related QOL than healthy normative samples. This study also compared children with several other chronic dis eases, such as asthma, obesity, and end-stage renal diseas e, all of which reported simila rly lower levels of QOL when compared to healthy normative data. Based on these findings, it could be assumed that a pediatric ICD sample would perform at a comp arable level to these other chronic illness populations, although no such research has yet been accomplished. Contributing Factors to QOL in Pediatric ICD Patients Psychosocial Adjustment The extant literature regarding psychological functioning of pediatri c ICD patients remains particularly limited with only four available studies. Hamilton and colleagues (1996) conducted a 5-year follow-up of 11 children with ICDs All children returned to school following implantation, although additional psychosocial variables were not examined. Wilson and colleagues (1998) examined the psychological and medical outcom es of 5 children with ICDs 11

PAGE 12

between the ages of 7 and 18 years. Although all children returned to school following implantation, two children developed transi ent neurological symptoms and experienced depressive symptoms including suic idal ideation. In their clini cal review of 27 pediatric and young adult ICD patients, Stefanelli and colleagues (2002) reported that 22% of their sample experienced various forms of anxiety disorder s (i.e., prolonged shock anxiety, school phobia, posttraumatic stress disorder) that seem directly related to the ICD. Young ICD patients are hypothesized to be at risk for psychosocial difficulties because of increased lifestyle disruption a nd distressing social comparisons (Sears et al., 2001). In addition to adjusting to the risk of potentially life-thr eatening arrhythmias, young patients must deal with the appearance of the ICD device, the likely expe rience of life-saving shock, and the social and lifestyle ramifications of the ICD. Not su rprisingly, the ICD can present significant psychological difficulties for some young patient s. DeMaso and colleagues (2004) studied 20 ICD recipients between the ages of 9 and 19 years, using both child and parent reports of patient functioning. These young patients did not report incr eased rates of depression or anxiety, but they had lower physical functioni ng and quality of life (QOL) as reported by their parents. The development of symptoms of anxiety has been established as the most significant and common psychological consequence for the adult ICD recipi ent (Sears et al., 1999). It is assumed that anxiety symptoms and related behaviors of hype rvigilance and avoidance would also exist in children and adolescents with ICDs, although this has yet to be explor ed by researchers. Investigation of the social ad justment of children with ICDs in terms of both peer and family functioning is also warranted. Children with ICDs may be labeled by parents, teachers, and peers as having special ne eds or being different. Such negative feedback may be internalized by the children, ther eby resulting in greater levels of distress and lower levels of 12

PAGE 13

social involvement. Children may also be hesitant or unable to participat e in school interactions due to real or perceived physical limitations and/or fears of rejection, resulting in a smaller network of friends. It has been suggested that the presence of severe medical conditions may make youth vulnerable for being t eased (Storch et al., 2004), a peer experience that has been uniquely related to negative psychosocial adju stment. Alpern and colleagues (1989) discussed concerns of social rejection by children with pacemakers although th is has not been explored in the context of ICDs. Clearly, the ICD and poten tially life threatening arrhythmias could produce similar if not greater effects. Device Acceptance In addition to psychological and social adju stment, it is notewort hy to investigate the health-related QOL of these young patients. Bu rke (2003) described patient acceptance among adult ICD patients as, a process characterized by choosing to live with technology, integrating technology into life, and living through technolo gy. To assess device acceptance, Burns and colleagues (2005) developed the Florida Patient Acceptance Survey (FPAS), a measure of cognitive appraisal of the ICD. A similar process is reflected in device-specific adjustment among pediatric ICD patients. Among children with congenital hear t disease, those with cardiac pacemakers were likely to report fears of pacemaker failure (Alpern et al., 1989). Similarly, it is necessary to investigate device acceptance among the pediatric ICD population. It seems likely that some children with ICDs will experience similar, if not greater fear of their device. Lead Fractures, Frequency and Appropriateness of Shocks While studies have shown that survival rates in children with ICDs are comparable to adults (Gradaus et al., 2003), children with ICDs frequently encounter entirely different experiences with their device. These differences are particularly related to exposure to shocks. 13

PAGE 14

Recent research by Kaski and colleagues (2007) observed ICD outcomes in pediatric patients with hypertrophic cardiomyopathy (one of many congenital heart diseases that are commonly treated with ICDs) and showed that 71.4% of their secondary prevention population (N=22) received an appropriate (occurred as a result of a sustained ventricular arrhythmia) shock during the observation period (range 1-2.3 years) compared to a mere 11% of adult comparisons over the same time period. This suggests that children with ICDs are more likely to experience a higher frequency of ventricular arrhyt hmias than adult ICD patients. In addition to the higher frequency of appropr iate shocks, research suggests that children with ICDs are also more susceptible to inappropr iate shocks, which are not necessary to sustain life. Korte and colleagues (2004) showed that ap proximately one half of pediatric ICD patients in their sample received inappropriate shocks ove r a four year period. The higher proportion of inappropriate shocks in children is mainly attributed to lead failure /fracture that occurs as a result of normal physical growth. Data from Cecchin and colleagues (2003) suggests that nearly 25% of all pediatric patients will enc ounter lead fracture. These lead fractures can result in device failure, or in a rapid series of inappropriate s hocks, referred to as an ICD storm. Collectively, pediatric ICD patients appear mo re likely to be exposed to ICD shocks, both appropriate and inappropriate, than thei r adult counterparts. QOL of Female ICD Patients In addition to pediatric ICD pa tients, women have also been identified by researchers as an at-risk population for psychological distress seco ndary to cardiac disease (Con et al., 1999; Vaccarino et al., 2003). Research in adult heart failure patien ts, who commonly required ICDs for treatment, revealed that female patients c onsistently exhibit lower QOL than their male counterparts, as well as higher levels of depression (Gottleib et al., 2004). Epidemiological studies suggest that women report clinically significant levels of depression and anxiety at 14

PAGE 15

almost twice the rate of males (Regier et al., 1994; Kessler et al., 1994). Walker and colleagues (2004) identified the existence of distinctly negative impact s of the ICD on women, including effects on social role maintenance, femininit y, sexuality, body image sa tisfaction, and caretaking abilities. Body image satisfaction remains a relevant issue in womens health research (Vazquez Sowell et al., 2006). Socially visible physical scars, such as those typical after an ICD implantation, have been related to poor ratings of overall appearance, as well as appearance satisfaction and appearance rela ted anxiety (Lawrence et al., 2004). Further research has suggested that alternativ e implantation techniques in women, such as submammary implantation, could potentially negate some of this impact (Giudici, 2001). However, no research has examined if this gender difference exists between boys and girls with ICDs in the same manner. Current Study The present study expands on th e current literature by exam ining possible differences between male and female pediatric ICD patients across social and cogniti ve functioning, as well as physical, psychosocial, and cardiac domains of QOL. The study included two aims: (1) to identify any differences in QOL between male and female pediatric ICD patients, and (2) to compare patient self reports and parent observe d reports on the measures of QOL and cognitive appraisal of their ICD. Consistent with the adult female literature it is hypothesized that female pediatric ICD patients will exhibit worse QOL than their male counterparts. Given that parents of chronically ill children tend to rate their childs physical and psychosocial functioning as lower than the childs report (Guya tt et al., 1997), it is expected that parent-observed reports on their childs psychosocial functioning will rate poorer than the childs self-report. 15

PAGE 16

CHAPTER 2 METHODS Participants Participants were 20 pediatric ICD patients a nd their respective pare nt/guardian who were on routine electrophysiology visits at one of two major southeaste rn medical centers. Patients ages ranged from 8-18 years. Sixty-five percent (n=13) of the study sample was male. There was no significant difference in age between males and females, t (18) = .126, p = .901. Of the male patients (n=13), 46% (n=6) identified th emselves as Caucasian, 46% (n=6) identified themselves as Hispanic/Latino, and 8% (n=1) se lf-identified as African-American. The female patient population (n=7) was se lf-identified as 57% (n=4 ) Caucasian and 43% (n=3) Hispanic/Latino. Participating legal guardians were primarily mothers (70%), with fathers (15%), grandparents (5%), other legal guardian (5%), and no response (5%) comprising a smaller percentage of the population. 60% of the adul ts in the sample reported being married or remarried, and the median annual family income ranged between $30,000 and $59,999. Procedure Potential participants and their parents/guard ians were approached by medical staff while attending routine cardiology/ electrophysiology appointments at Shands Hospital at the University of Florida in Gainesville or at Bayl or University Medical Ce nter in Houston Texas. For study eligibility, patients we re required to meet the foll owing criteria: (1) past ICD implantation, (2) age between 8 and 18 years, (3) ab ility to read and comple te questionnaires, (4) ability to read and write English, and (5) accomp anied by a consenting parent or guardian who is at least 18 years old. Patients were excluded from consideration in this study if they had ever been diagnosed with mental retardation or a psyc hotic disorder, and/or if they were unable to read and write in English. None of the potenti al participants approached for this multi-center 16

PAGE 17

IRB approved study met the criteria for exclusion. After obtaining informed consent and assent, the pediatric ICD patient and the parent/gua rdian were each given separate self-report psychosocial assessment packet. The packets we re completed in the clinic waiting rooms and took approximately 20 minutes to complete. Staff members were available to help the patient and parent/guardian for clarification. Measures Demographics Each parent/guardian comple ted a demographic questionnai re to obtain the following information about the patient and parent/guardian: (1) age, (2) gender, (3) race/ethnicity, and (4) highest grade completed. Parent/guardian marita l status and average a nnual household income were also obtained. Medical Severity The Defibrillator Severity Index (DeMaso et al., 2004) is a cardiologist-designed rating scale that allows physicians and medical staff to classify ICD pa tients in a standardized format based on the severity of their underlying disease. The following domains are covered in the 8item index: (1) cardiovascular disease, (2) surgic al treatment, (3) ICD indi cations, (4) ventricular arrhythmias, (5) current arrhythmia medications (6) appropriate ICD discharges, (7) comorbid medical conditions, and (8) activity limitations. Each item is rated by degree of severity, with higher ratings indicating increase d severity. An example item a ssessing ventricular arrhythmia diagnoses asks the medical provider to rate on the following scale, ) None, 1) Nonsustained ventricular tachycardia, 2) Sust ained monomorphic or po lymorphic ventricular tachycardia, or 3) Ventricular fibrillation. Scoring is accomplishe d by determining the total of items 1 through 8, with a scoring range of 2 to 18. This measure has shown acceptable cardiologist inter-rater reliability, Pearsons r = 0.90, 0.51, p < 0.01. 17

PAGE 18

Questionnaires Child questionnaires The PedsQL Pediatric Quality of Life Inventory Child Versions (Uzark et al., 2003; Varni, 1999) was used to assess pediatric QOL. Th e PedsQL versions that were used in this study include the core module measuring generic QOL in the last month, with separate versions for children 8-12 years of age and teens 13-18 years of age. This 23-item module assesses four scales (Physical 8 items, Emotional 5 items, Social 5 items, and School 5 items) which generate three summary scores: (1) Total Scale Score 23 items, (2) Physical Health Summary Score 8 items, and (3) Psychosocial Health Summary Score 15 items. All items are statements to which the child is asked to rate their agreement on a 5-it em Likert scale ranging from Never to Almost Always, and include statem ents such as It is hard to pay attention in class, and I worry about what will happen to me. Cronbachs values for reliability for the Total Scale Score ( = 0.88), Physical Health Summary Score ( = 0.80), and Psychosocial Health Summary Scale ( = 0.83) are all within acceptable li mits for group comparisons. In terms of validity, the PedsQL differentiates not only between healthy children and acutely or chronically ill children, but also between levels of disease severity within a given medical condition. In addition, the PedsQL 3.0 Cardiac Module (Uzark et al., 2003) was used to measure cardiac-specific QOL with versions for children 8-12 years of age and teen s 13-18 years of age. Statements from this disease-specific 27-item m odule include statements such as, My lips turn blue when I run, and I dont li ke other people to see my scars. This module has 5 scales assessing: 1) symptoms 7 items, 2) perceive d physical appearance 3 items, 3) treatment anxiety 4 items, 4) cognitive problems 5 items, and 5) communication 3 items. Additionally, a treatment barriers scale (5 item s) was included to assess cardiac medication 18

PAGE 19

adherence. Similar to the ot her PedsQL modules, patients rate their agreement on a 5-point Likert scale ranging from Never to Almost Al ways. This module has exhibited satisfactory internal consistency, with reliability values across scales ranging from r = 0.72 to r = 0.85. The Childrens Loneliness and Social Dissatisfaction Scale (LSDS; Asher & Wheeler, 1985) was used to assess loneliness as an indi cator of social adjust ment. This 24-item questionnaire is comprised of statements to which the child rates their agreement on a 5-point scale ranging from Thats not true at all about me to Thats always true about me. Of the 24 items, 16 have been factor analyzed to be lo aded on the factor of loneliness and social dissatisfaction. Those items focus on: (1) childrens feelings of loneliness, (2) feelings of social adequacy versus inadequacy, and (3 ) subjective estimations of peer status. Statements from this measure include, I have nobody to talk to in class, and Its easy for me to make new friends at school. The collective 16 items have been f ound to be internally consistent (Cronbachs = 0.90). The remaining eight items are filler item s, focusing on hobbies and preferred activities, and are not loaded on the loneliness a nd social dissatisfaction factor. The Florida Patient Acceptance Survey Child Version (FPAS; Burns et al., 2005) was used to assess patient cognitive appraisal and acceptance of the ICD. This scale was developed for an adult population and was modified to be reader-friendly for children under 18 years of age. This 17-item measure consists of statemen ts related to the ICD to which the patient rates their agreement on a 5-point sc ale ranging from Strongly Disagr ee to Strongly Agree. Of the 17 items, two are filler items, with the rema ining 15 loading on one of four factors. Each factor has exhibited acceptable reliability using Cronbachs The first factor, Return to Function ( = 0.89), includes four statements such as, I know I will be able to return to school if I want to. The second fact or, Device-Related Distress ( = 0.79), contains five statements such 19

PAGE 20

as, It is hard for me to do things without thinking about my device. The third factor, Positive Appraisal ( = 0.82), consists of four statements incl uding, I am safer because of my device. The fourth factor, Body Image Concerns ( = 0.74), includes two statemen ts such as, I feel ugly because of my device. Overall, the FPAS has exhibited good internal consistency ( = 0.83). Parent questionnaires The PedsQL Pediatric Quality of Life Inventory Parent Versions (Uzark et al., 2003; Varni, 1999) was used to assess pediatric QOL, as answered by the parent about their child. The PedsQL parent versions used in this study include the core module measuring generic QOL, with separate versions for parents to answer for their 8-12 year old child or for their 13-18 year old teen. Like the child version, th is version is a 23-item measure of four core scales (Physical Functioning, Emotional Functioni ng, Social Functioning, and School Functioning) that generate three summary scores (Total Scale Score, Phys ical Health Summary Score, and Psychosocial Health Summary Scale). The parent versions of this measure have shown similar reliability to the child versions (Total Scale Score = 0.90, Physical Health Summary Score = 0.88, and Psychosocial Health Summary Scale = 0.88). The statements are slightly modified from the child version, and ask the parent/ guardian to rate how much of a problem their child has had in each of the measured domains in the past month. Similarly, the parent proxy version of the PedsQL 3.0 Cardiac Module (Uzark et al., 2003) was used to measure parent-perceived cardiac-sp ecific QOL with parent versions for children 812 years of age and teens 13-18 years of age. This 27-item measure asks th e parent to rate their agreement to statements about their childs he art-related functioning on a 5-point Likert scale ranging from Never to Almost Always. Like the child version, the parent proxy version of this module has 5 scales assessing: 1) symptoms 7 items, 2) perceived physical appearance 3 items, 3) treatment anxiety 4 items, 4) cogni tive problems 5 items, and 5) communication 3 20

PAGE 21

items. Additionally, a treatment barriers scale (5 items) wa s once again included to assess cardiac medication adherence. Ps ychometric testing of the pare nt proxy version of this module has demonstrated satisfactory internal consistency reliability across all scales, ranging from r = 0.81 to r = 0.95. The FPAS Child by Parent Proxy Version (FPAS; Burns et al., 2005) was used to assess perceived patient device acceptance, as answered by the parent(s). The FPAS scale was modified to be appropriate for the parent to answer each item as they believe th eir child with an ICD would answer for themselves. Beyond the phrasing modifications, the measure is identical to the child version. Sample statements include, It is hard for my child to function without thinking about his/her device, and My child feel s less attractive because of the device. Statistical Analyses All data processing and statisti cal analyses were conducted us ing the statistical software package, SPSS for Windows Version 15.0. To investigate any differences in QOL between male and female pediatric ICD patients, a one-way analysis of variance test was utilized, with gender used as the fixed variable, and the PedsQL Summary Scales (Total Summary Scale, Physical Health Summary Scale, and Psychosocial Summary Scale) as dependent variables. To examine the relationship between patient self-report and thei r respective parentobserved reports, paired samples t-tests were conducted on the PedsQL Child vs. Parent versions, as well as the Child and Child by Parent Proxy vers ions of the FPAS. Since multiple statistical analyses were conducted on the same data, a Bonf erroni correction factor was implemented to control for any family-wise error and the resulting criterion level of significance was set to p = .01. 21

PAGE 22

To examine any gender differences in social functioning, independent sample t-tests were conducted comparing mean scores on the Childrens Loneliness and Social Dissatisfaction Scale (LSDS) between genders. In order to identify any differences in medical severity between male and female patients as a potential factor influencing QOL, independent sample t-tests were conducted comparing mean scores on the Defibrillator Severity Index between males and females. 22

PAGE 23

CHAPTER 3 RESULTS Demographics of Participants The participants in this study were predomin antly male (65%), with 50% identifying as Caucasian and 45% identifying as Hispanic/Latino. Only one participant (5%) identified as African-American. Detailed descriptiv e statistics are shown in Table 1. Effect of Gender on QOL An omnibus one-way analysis of vari ance (ANOVA) was conducted to examine differences in QOL between genders in our sample Based on the extant adult ICD literature, it was expected that female pediatric ICD patient s would report lower leve ls of QOL than their male counterparts. Means and standard deviations for QOL by gender ar e reported in Table 2. Statistical analyses indicated that females re ported significantly lower scores on the PedsQL Total Scale Score, F (1,19) = 5.70, p = .028, Physical Hea lth Summary Score, F (1,19) = 7.57, p = .013, and Cardiac Health Summary Score, F (1,19) = 7.63, p = .013, than their male counterparts (Table 3). The effect of gender also showed a trend toward significance for the Psychosocial Health Summary Score, F (1,19) = 4.34, p = .052, with females reporting lower scores in this domain as well. Additional analyses compari ng males and females across cognitive appraisal (Florida Patient Acceptance Survey) and social (Loneliness and Social Dissatisfaction) domains were not significant. Further explorator y analysis showed th at neither the FPAS, p = .377, nor the LSDS, p = .167, were significantly correlated with the PedsQL Total Scale Score in this sample. Additional analysis showed that the Pe dsQL Total Scale score and age of the patient were not significantly correlated, p = .438. 23

PAGE 24

Relationship between Patien t Self-Reports and Parent-Observed Reports on QOL and Cognitive Appraisal of the ICD Paired-sample t-tests were conducted to exam ine the relationship between patient selfreport and their respective pa rent-observed reports on the PedsQL and FPAS measures. Parentreports were predicted to be worse than patient self-reports. Multiple comparisons were conducted on the same data, necessitating a Bonfe rroni correction to avoid family-wise error. This was accomplished by dividing the previous level for significance, .05, by the number of comparisons, which was five. Therefore, for thes e analyses values for significance were set at p = .01. Means and standard deviations for QOL Summary Scale Scores and FPAS scores by parents and patients are shown in Table 4. Statistical analyses, s hown in Table 5, indicated that parents rated their childs func tioning significantly lower than the patient self-report on the PedsQL Total Scale Score ( t (19) = 3.42, p = .003) and the Psychosocial Health Summary Scale, t (19) = 3.21, p = .005 (Table 4). Further, results indi cated a trend toward significantly lower parent-observed scores on both the Physical Health Summary Scale, t (19) = 2.45, p = .024, and the FPAS, t (13) = 2.94, p = .012. No significant differences were found in the Cardiac Health Summary Scale. Additionally, no significant differences existed be tween reports of parents of female children versus parents of male children. Effect of Medical Severity on QOL To examine any effect that medical severi ty may have on QOL in this sample, an independent-samples t-test was conducted comp aring male and female total scores on the Defibrillator Severity Index (DSI). The males in our sample were rated with a mean score of 8.20 and a standard deviation of 2.394. The female s were rated with a mean score of 8.40 and a standard deviation of 3.578. Statistical an alyses indicated no si gnificant difference, p = .899, in medical severity between genders in this samp le. Because there was no difference in medical 24

PAGE 25

severity between males and females in this sample there was no need to c ontrol for this variable when examining differences in QOL. Additional exploratory analysis in dicated that medical severity was not significantly correlated, p = .311, with the PedsQL To tal Scale Score in this sample. Comparison of Social Functioning In order to examine any differences between ge nders in the domain of social functioning, an independent-samples t-test was conducted co mparing male and female total scores on the Childrens Loneliness and Soc ial Dissatisfaction Scale (LSDS). In this sample, the males scored a mean of 52.08 and a standard deviation of 12.8 9. The females scored a mean of 60.67 and a standard deviation of 14.17. Upon completion of statistical analyses, no significant differences in social functioning were noted between males and females in this study, although this may be attributed to the relatively small sample size rath er than the effect of gender on this domain. Further exploratory analysis of effect size produced a Cohens d value that suggests that there exists a medium to large effect of gende r on ratings of the LSDS in this sample, d = .63. 25

PAGE 26

Table 1. Participant Demographic Data N % M SD Range Child Age Gender Male Female Race/Ethnicity Caucasian African-American Hispanic 20 13 7 10 1 9 65.0 35.0 50.0 5.0 45.0 13.00 3.63 8-18 Parent/Guardian Relationship to child Mother Father Grandparent Other legal guardian No response Marital Status Single/Never Married Married/Remarried Separated/Divorced No response Annual family income Below 14,999 15,000-29,999 30,000-44,999 45,000-59,999 60,000-74,999 75,000-89,999 90,000 and above No response 14 3 1 1 1 4 12 1 3 1 3 4 2 0 1 2 7 70.0 15.0 5.0 5.0 5.0 20.0 60.0 5.0 15.0 5.0 15.0 20.0 10.0 0.0 5.0 10.0 35.0 26

PAGE 27

Table 2. Quality of Life Means and Standard Deviations by Gender PedsQL Scale Boys (n=13) M SD Girls (n=7) M SD Total Scale Score 79.48 11.78 62.56 20.19 Psychosocial Health Summary Score 79.62 14.11 63.09 21.46 Physical Health Summary Score 79.17 10.52 61.61 18.29 Cardiac Health Summary Score 85.97 6.95 66.93 23.49 27

PAGE 28

Table 3. One-way ANOVA of Gender on Quality of Life PedsQL Scale F (1,19) p-value Total Scale Score 5.701 .028* Psychosocial Health Summary Score 4.344 .052 Physical Health Summary Score 7.574 .013* Cardiac Health Summary Score 7.631 .013* Significant at p < .05 28

PAGE 29

Table 4. QOL and FPAS Means and Standard Devi ations by Patient Report and Parent Report Child Report M SD Parent Report M SD PedsQL Total Scale Score 73.56 16.88 64.58 13.01 PedsQL Psychosocial Health Summary Score 75.26 16.90 64.91 15.92 PedsQL Physical Health Summary Score 73.02 15.79 65.89 14.03 PedsQL Cardiac Health Summary Score 79.31 17.07 76.38 15.36 Florida Patient Acceptance Survey (FPAS) Score 73.81 15.06 66.07 16.07 29

PAGE 30

Table 5. Paired-Sample t-tests of PedsQL and FPAS Scores between Patient Report and Parent Report t Degrees of Freedom (df) p-value PedsQL Total Scale Score 3.420 19 .003* PedsQL Psychosocial Health Summary Score 2.445 19 .024 PedsQL Physical Health Summary Score 3.210 19 .005* PedsQL Cardiac Health Summary Score 1.025 19 .318 Florida Patient Acceptance Survey (FPAS) Score 2.935 13 .012 30

PAGE 31

CHAPTER 4 DISCUSSION The current study is unique in that it is one of the first to examine gender differences in quality of life of pediatric ICD patients. By formally investigating thes e gender differences, this study was able to add to the limited information that exists in the extant research literature in this area. Few studies have examined the psychosoc ial impact that ICD implantation presents to pediatric populations. Generaliza tions from adult lite rature cannot always be assumed to be accurate due to numerous developmental differences (DeMaso et al., 2004). Previously, research had not focused on different treatments or outco mes for male versus female pediatric ICD patients, giving clinicians few options other than utilizing a uniform approach to implantation, treatment and maintenance. This study identified some apparent differences in quality of life between genders, necessitating further research tailored to gender-specific approaches to treatment of the pe diatric ICD patient. This study found that female pediatric ICD patients, like adult female ICD patients, exhibited poorer quality of life than their male counterparts. Specifically, gender differences in quality of life of pediatric ICD patie nts in this study were consistent across all of the subscales of the PedsQL with the exception of the Psychosocial Health Summary Score, which also showed a trend towards significance. Sin ce there were no significant differen ces in medical severity or age between genders in our study, it seems likely that this difference in quality of life could be related to the ICD, although furthe r research is needed for clarification. Given the similarly poor quality of life presented in adult female ICD pa tients, it is possible that pediatric female ICD patients experience some of the same negative factors outlined by Walk er and colleagues (2004), including social role maintenance, femininit y, sexuality, body image satisfaction, and caretaking 31

PAGE 32

abilities. However, until more specific research can be conducted, no precise attributions can be made. Findings from this study suggest that the imp act of the ICD on pediatric quality of life is potentially remarkable. Given the higher like lihood of physical restrictions than healthy children, it seems logical that children with ICDs would rate lower levels of quality of life. While female ICD patients exhibited significantly lower physical quality of life ratings than males, both genders rated distinctly lower le vels of physical quali ty of life (Males M = 79.17, SD = 14.11; Females M = 61.61, SD = 18.29) when compared to published norms ( M = 84.41, SD = 17.26) (Varni et al., 2001). This drop in physical health-relate d quality of life, a phenomenon shared by many childhood medical conditi ons, highlights the impact of the ICD as comparable to other chronic condi tions in overall functioning. Comparing the self-reported qual ity of life of children in the current sample to previously published reports of quality of life in children with a variety of chronic health conditions (Varni et al., 2007), illustrates that point and emphasizes the potential negative impact of an ICD on health-related quality of life. Specifically, children with IC Ds in our sample reported a mean total quality of life score of 73.53 ( SD = 16.88), which is commensurate with mean scores reported in other chronic illness conditions, including obesity (74.00, SD = 14.20), end-stage renal disease (73.97, SD = 15.22), psychiatric disorders (72.20, SD = 12.70), and cancer (71.97, SD = 16.12). This further illustrates the gr avity of this conditi on on overall functioning, necessitating further research. Regarding the social domain of quality of life, Alpern and colleagues (1999) focused on concerns about social rejection in pediatric pacemaker populations. It seems logical that an ICD could have a similar, if not more intense imp act on social functioning in children. The present 32

PAGE 33

study shed some light on this issue in the par ticipants ratings on the Ch ildrens Loneliness and Social Dissatisfaction Scale (LSDS). Although there were no significant gender differences on this measure, both male ( M = 52.08, SD = 12.90) and female ( M = 60.67, SD = 14.17) participants mean scores were ma rkedly higher than published norms (M = 29.88, SD = 8.01) (Asher & Wheeler, 1985), indicati ng elevated feelings of loneli ness, social inadequacy, and negative views of peer status. Additional explorator y analysis indicated that there is a medium to large effect of gender on social functioning in this study as measured by the LSDS, such that females feel lonelier and more rejected than their male counterparts. Thus, the non-significant findings of the present study are likely a consequen ce of the small sample size rather than a true representation of no gender differe nce in this domain. Since it is already hypothesized that young ICD patients are at risk for psychosocial difficulties because of increased lifestyle disruption and distressing social comparisons (Sears et al., 2001), this study suggests that further research focusing on improving social functioning of all pediatric ICD patients, with additional emphasis on females, is largely warranted. Previous research on children with pacemakers suggested that these children were likely to report fears of pacemaker failure (Alpern et al., 1989). Similarly, it was hypothesized that children and adolescents with ICDs could potenti ally exhibit fear and an overall negative appraisal of the device due to the invasive nature of the device and the shocks that it generates. Results from the current study indicate that pedi atric ICD patients exhibi t cognitive appraisal of their ICD on a level similar to adults, although no normative data is currently available. No differences were noted between males and fema les in this domain. Additional exploratory analyses, although not part of this studys hypot hesis, indicated no si gnificant correlation between the FPAS and PedsQL Total Scale Score. This could suggest that cognitive appraisal of 33

PAGE 34

the ICD is not associated with quality of life; although the small sample size in the present study limits any related assumptions. Previous research using parent -reported quality of life in pe diatric ICD patients indicated that this population exhibits poor quality of life (DeMaso et al., 2004). Chronically ill child literature suggests that parent reports of patient functioning are variable in their accuracy (Guyatt et al., 1997). It was hypothesized that parent reports of pediat ric ICD patient functioning would differ from patient reports. Parents of pedi atric ICD patients in the current study reported significantly lower levels of func tioning than patient self-reports on the Total Scale Score and the Psychosocial Health Summary Scale of the Pe dsQL, with trends toward significance on the Physical Health Summary Scale and the FPAS. This reporting gap across various domains is noteworthy for clinicians when inquiring about a patients functioning. This difference in observed functioning extends knowledge of similar pa rent/patient gaps in other chronically ill child populations to the pediatri c ICD population. Interestingly, no significant differences were noted between patient and parent on the Cardiac Health Summary Scale of the PedsQL, indicating a much higher level of congruency in the cardiac-specific domain than appears in broader domains of functioning. This could potentially be attributed to the amount of focus spent on the condition itself, rath er than the ramifications of the condition on other areas of functioning. Limitations The current study has some limitations that must be taken into consideration when interpreting its data and analyses First, this pilot study used a small sample size, which limited the number and types of analyses that could be conducted. The size of this sample also restricted the variability of patient attributes, such as race/ethnicity, fami ly income, and locality. Adding more participants to the sample may further exem plify the apparent gende r gap in the quality 34

PAGE 35

of life of these patients. Sec ond, while this study has illuminate d an apparent gender difference in quality of life, no causality can be assessed fr om this information. Third, participants were recruited from only two medical centers in Florida and Texas, respectively. The sample used in this is study is not necessarily representative of pediatric ICD populations in other areas of the country. Fourth, the FPAS, a valid and reliable measure of cognitive appr aisal and acceptance of the ICD, does not currently have normative data available for comparisons to pediatric patients. Despite these limitations, the current study adds vital information to the limited knowledge of psychosocial functioning in pe diatric ICD populations. Given th at this is one of the first studies to examine gender differences in psychosocial functioning of this population, the information gained is valuable in our effort to provide more comprehensive and individuallytailored treatment to these children with a goal of improved quality of life. Implications and Future Research The current study identified an apparent gender difference in quality of life of pediatric ICD patients. Future research should expand our unde rstanding of this difference by identifying specific factors responsible for this gender gap. Specifically, research should focus on identifying whether this apparent gender difference is in fact a result of factors associated with the ICD, or if what we are seeing is a result of intrinsic differences in quality of life between males and females in youth and adolescence. By identifying the specific pred ictors of quality of life in this population, researchers will be be tter equipped to develop and implement genderspecific and pediatric-specific psychosocial interventions in order to improve overall functioning. These studies should include larger and more cu lturally and socioeconomically diverse populations in order to make more accurate generalizations from findings. The findings from the current study also illust rated a difference in pa tient self-report and parent-observed report of overall functioning. These findings could be used in future research 35

PAGE 36

investigating factors that may influence this diffe rence (i.e., financial problems, family problems, etc.), as well as developing interventions to reduce this gap. Once again, a larger and more diverse sample would aide in id entifying these contributing factors. Clinicians should also take this information into consideration when rece iving conflicting information from parent and patient regarding psychosocial functioning. 36

PAGE 37

APPENDIX CHILD MEASURES FPAS Child We want to understand what it is like for you to live with a medical device. Below are some statements that describe living with a medical device. Please rate the extent to which you agree or disagree with each of the following statements by circling the most appropriate numbered response. Strongly Disagree Mostly Disagree Neither Agree or Disagree Mostly Agree Strongly Agree 1. Thinking about the device makes me sad. 1 2 3 4 5 2. When I think about the device I dont do things I like. 1 2 3 4 5 3. I dont do my usual activities because I feel ugly by my device. 1 2 3 4 5 4. It is hard for me to do things without thinking about my device. 1 2 3 4 5 5. My device was my best treatment option. 1 2 3 4 5 6. I know I will be able to return to school if I want to. 1 2 3 4 5 7. I am safer because of my device. 1 2 3 4 5 8. The positive benefits of this device outweigh the negatives. 1 2 3 4 5 9. I would receive this device again. 1 2 3 4 5 10. I know enough about my device. 1 2 3 4 5 11. I am careful when hugging or kissing people I love. 1 2 3 4 5 12. I have returned to a full life. 1 2 3 4 5 13. I feel that others see me as ugly by my device. 1 2 3 4 5 14. I feel ugly because of my device. 1 2 3 4 5 15. I know how my device works and what it does for me. 1 2 3 4 5 16. I am not able to do things with my family the way I used to. 1 2 3 4 5 17. I am concerned about resuming my daily physical activities. 1 2 3 4 5 37

PAGE 38

LSDS Below are some statements about how you may feel about people, places, or activities. Please rate how true each of the following statements is for you. Always Mostly Sometimes Hardly Ever Not At A True True True True True 1. Its easy for me to make new friends at school........................................................................................... 2. I like to read........................................................................ 3. I have nobody to talk to in class......................................... 4. Im good at working with other children in my class............................................................ 5. I watch TV a lot.................................................................. 6. Its hard for me to make friends at school.................................................................................. 7. I like school......................................................................... 8. I have lots of friends in my class........................................ 9. I feel alone at school........................................................... 10. I can find a friend in my class when I need one.............................................................................. 11. I play sports a lot................................................................. 12. Its hard to get ki ds in school to like me........................................................................................ 13. I like science....................................................................... 14. I dont have anyone to play with at school.................................................................................. 15. I like music.......................................................................... 16. I get along with my classmates........................................... 17. I feel left out of things at school......................................... 18. Theres no other kid I can go to when I need help at school.............................................................. 38

PAGE 39

19. I like to paint and draw....................................................... 20. I dont get along with other children in school.................................................................................. 21. Im lonely at school............................................................ 22. I am well liked by the kids in my class............................... 23. I like playing board games a lot.......................................... 24. I dont have any friends in class......................................... 39

PAGE 40

LIST OF REFERENCES Alpern, D., Uzark, K., & Dick, M. (1989). Ps ychosocial responses of children to cardiac pacemakers. Journal of Pediatrics, 114 (3), 494-501. American Heart Association Sta tistics Committee and Stroke Statistics Subcommittee. (2006). Heart and stroke statistics 2006 update Circulation, 113, e85-e151. American Heart Association Sta tistics Committee and Stroke Sta tistics Subcommittee. (2007). Heart and stroke statistics 2007 update. Circulation, 115, e69-e171. Asher, S. R., & Wheeler, V. A. (1985). Child rens loneliness: A comparison of rejected and neglected peer status. Journal of Consulting an d Clinical Psychology, 53 (4), 500-505. Bardy, G. H., Lee, K. L, Mark, D. B., Poole, J. E., Packer, D. L, Boineau, R., Domanski, M., Troutman, C., Anderson, J., et al. (2005). Am iodarone or an impla ntable cardioverterdefibrillator for conge stive heart failure. New England Journal of Medicine, 352(3), 225237. Burke, J. L., Hallas, C. N., Clark-Carter D., White, D., & Connelly, D. (2003). The psychosocial impact of the implantable cardiove rter defibrillator: A meta-analytic review. British Journal of Health Psychology, 8(2), 165-178. Burns, J. L., Serber, E. R., Keim, S., & Sears, S. F. (2005). Measuri ng patient acceptance of implantable cardiac device therapy: Initial ps ychometric investiga tion of the Florida Patient Acceptance Survey. Journal of Cardiovascul ar Electrophysiology, 16 (4), 384390. Buxton, A. E., Lee, K. L., Fisher, J. D., Josephson, M. E., Prystowsky, E. N., & Hafley, G. (1999). A randomized study of the prevention of sudden death in patients with coronary artery disease. Multicenter unsustain ed tachycardia trial investigators. New England Journal of Medicine, 341 (25), 1882-1890. Cadman, D., Boyle, M., Szatmari, P., & Offord, D. R. (1987). Chronic illness, disability, and mental and social well-being: Findings of the Ontario Child Health Study. Pediatrics, 79(5), 805-813. Cecchin, F., Alexander, M. E., & Walsh, E.P.(2 003). Pattern of initiation of ventricular arrhythmias in pediatric and congenital he art disease patients with implantable defibrillators. Pacing and Clinical Electrophysiology 26, 1061. Chatrath, R., Porter, C. B., & Ackerman, M. J. (2002). Role of transvenous implantable cardioverter-defibrillators in preventi ng sudden cardiac death in children. Mayo Clinic Proceedings, 77(3), 226-231. 40

PAGE 41

Con, A. H., Linden, W., Thompson, J. M., & Ignas zewski, A. (1999). The psychology of men and women recovering from cor onary artery bypass surgery. Journal of Cardiopulmonary Rehabilitation, 19 (3), 152-161. Cooper, J. M., Stephenson, E. A., Berul, C. I., Walsh, E. P., & Epstein, L. M. (2003). Implantable cardioverter defibrillator lead co mplications and laser extraction in children and young adults with congenital heart dis ease: Implications for implantation and management. Journal of Cardiovascular Electrophysiology, 14 (4), 344-349. DeMaso, D. R., Lauretti, A., Spieth, L., van der Feen, J. R., Jay, K. S., Gauvreau, K., Walsh, E. P., & Berul, C. I. (2004). Psychosocial factors and quality of life in children and adolescents with implantable cardioverter defibrillators. American Journal of Cardiology 93, 582-587. DiMarco, J. P. (2003). Implanta ble cardioverter-defibrillators. New England Journal of Medicine, 349 (19), 1836-1847. Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196, 129-136. Giudici, M. (2001). Experience with a cosmetic approach to implantation. Pacing and Clinical Electrophysiology, 24, 1679. Godemann, F., Butter, C., Lampe, F., Linden, M., Schl egl, M., Schultheiss, H. P., & Behrens, S. (2004). Panic disorders and agor aphobia: Side effects of tr eatment with an implantable cardioverter defi brillator. Clinical Cardiology, 27(6), 321-326. Gottlieb, S. S., Khatta, M., Friedmann, E., Einbinde r, L., Katzen, S., Baker, B., Marshall, J., Minshall, S., et al. (2004). The influence of age, gender, and race on the prevalence of depression in heart failure patients. Journal of the American College of Cardiology, 43(9), 1542-1549. Gradaus, R., Wollmann, C., Kobe, J., Hammel, D ., Kotthoff, S., Block, M., Breithardt, G., & Bocker, D. (2003). Potential benefit from im plantable cardioverter defibrillator therapy in children and young adolescents. Heart, 90, 328-329. Guyatt, G. H., Juniper, E. F., Griffith, L. E., F eeny, D. H., & Ferrie, P. J. (1997). Children and adult perceptions of childhood asthma. Pediatrics, 99, 165-168. Hamilton, R. M., Dorian, P., Gow, R. M., & Williams W. G. (1996). Five-year experience with implantable defibrillators in children. American Journal of Cardiology, 77 (7), 524-526. Herbst, J. H., Goodman, M., Feldstein, S., & Reill y, J. M. (1999). Health -related quality-of-life assessment of patients with life-thr eatening ventricula r arrhythmias. Pacing and Clinical Electrophysiology, 22 (6), 915-926. 41

PAGE 42

Kaski, J. P., Esteban, M. T. T., Lowe, M., Spor ton, S., Rees, P., Deanfiled, J. E., McKenna, W. J., Elliott, P. M. (2007). Outcomes after impl antable cardioverter defibrillator treatment in children with hype rtrophic cardiomyopathy. Heart 93, 372-374. Kessler, R. C., McGonagle, K. A., Zhao, S., Ne lson, C. B., Hughes, M., Eshleman, S., Wittchen, H. U., & Kendler, K. S. (1994). Lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States. Results from the national comorbidity study. Archives of General Psychiatry, 51 (1), 8-19. Korte, T., Koditz, H., Niehaus, M., Paul, T ., & Tebbenjohanns, J. (2004). High incidence of appropriate and inappropriate ICD therapies in children and adolescents with implantable cardioverter defibrillator. Pacing and Clinical Electrophysiology 27, 924-932. Lawrence, J., Fauerbach, J., Heinberg, L., & Doct or, M. (2004). Visi ble vs. hidden scars and their relation to body esteem. Journal of Burn Care Rehabilitation, 25 (1), 25-32. Lemon, J., Edelman, S., & Kirkness, A. (2004) Avoidance behaviors in patients with implantable cardioverter defibrillators. Heart & Lung, 33 (3), 176-182. Moss, A. J., Hall, W. J., Cannom, D. S., Daubert, J. P., Higgins, S. L., Klein, H., Levine, J. H., Saksena, S., et al. (1996). Improved survival with an implanted defibrillator in patients with coronary disease at high risk for ve ntricular arrhythmia. Multicenter automatic defibrillator implantation trial investigators. New England Journal of Medicine, 335 (26), 1933-1940. Myerburg, R. J., & Castellanos, A. (2006). Emerging paradigms of the epidemiology and demographics of sudden cardiac arrest. Heart Rhythm, 3 (2), 235-239. Pless, J. B., & Roghmann, K. J. (1971). Chronic illness and its consequences: Observations based on three epidemiologic surveys. Journal of Pediatrics, 79 (3), 351-359. Regier, D. A. (1994). The NIMH epidemiologic catchment area program: Historical context, major objectives, and study popul ation characteristics. Archives of General Psychiatry, 41, 934. Sears S. F., Burns J. L., Handberg E., Sotile W. M., & Conti J. B. (2001). Young at heart: Understanding the unique psyc hosocial adjustment of young implantable cardioverter defibrillator recipients. Pacing and Clinical Electrophysiology 24, 1113-1117. Sears, S. F., & Conti, J. B. (2002). Qua lity of life and psychological functioning of ICD patients. Heart, 87 (5), 488-493. Sears, S. F., Todaro, J. F., Saia, T. L., Sotile, W. M., & Conti, J. B. (1999). Examining the psychosocial impact of implan table cardioverter defibrilla tors: A literature review. Clinical Cardiology 22, 481-489. 42

PAGE 43

Stefanelli, C. B., Bradley, D. J., Leroy, S., M acdonald, D., Serwer, G. A., & Fischbach, P. S. (2002). Implantable cardioverter defibrillator therapy for life-threatening arrhythmias in young patients. Journal of Interventional Cardiac Electrophysiology, 6, 235-244. Storch, E. A., Lewin, A., Silverst ein, J. H., Heidgerken, A. D., St rawser, M. S., Baumeister, A., & Geffken, G. R. (2004). Peer victimiza tion and psychosocial adjustment in children with type 1 diabetes. Clinical Pediatrics, 43 (5), 467-471. Uzark, K., & Jones, K. (2003). Parenting stress and children w ith heart disease. Journal of Pediatric Health Care, 17 (4), 163-168. Uzark, K., Jones, K., Burwinkle, T. M., & Varni, J. W. (2003). The pediatric quality of life inventory in children with heart disease. Progress in Pediatric Cardiology, 18 (2), 141149. Vaccarino, V., Lin, Z. Q., Kasl, S. V., Mattera, J. A., Roumanis, S. A., Abramson, J. L., & Krumholz, H. M. (2003). Gender differences in recovery after coronary bypass surgery. Journal of the American College of Cardiology, 41 (2), 307-314. Varni, J. W., Limbers, C. A.,, & Burwinkle, T. M. (2007). Impaired h ealth-related quality of life in children and adolescents with chroni c conditions: A compara tive analysis of 10 disease clusters and 33 diseas e categories/severities util izing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5(43). Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37 (2), 126-139. Vazquez Sowell, L., Kuhl, E. A., Sears, S. F., Klodell, C. T., & Conti, J. B. (2006). Device implant technique and consider ation of body image: Specific procedures for implantable cardioverter defibrillators in female patients. Journal of Womens Health, 15 (7), 830835. Walker, R. L., Campbell, K. A., Sears, S. F., Gle nn, B. A., Sotile, R., Curtis, A. B., & Conti, J. B. (2004). Women and the implantable cardiove rter defibrillator: A lifespan perspective on key psychosocial issues. Clinical Cardiology, 27(10), 543-546. Wilson, W. R., Greer, G. E., & Grubb, B. P. (1998) Implantable cardiover ter-defibrill ators in children: A single-inst itutional experience. Annals of Thoracic Surgery, 65 (3), 775-778. 43

PAGE 44

BIOGRAPHICAL SKETCH Jay St. Amant received a bachelors degree in psychology from Mount Olive College in 2006. He is currently a masters degree candidate in the Department of Clinical and Health Psychology at the University of Florida. Upon receipt of his masters degree in May 2008, he will continue his doctoral tr aining in clinical psychology. 44