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Title: Development of a program to improve the management of Medicaid recipients with sickle cell disease in Florida
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Title: Development of a program to improve the management of Medicaid recipients with sickle cell disease in Florida
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Development of a Program to Improve the Management of Medicaid
Recipients with Sickle Cell Disease in Florida


Richard Lottenberg, MD
Robert Boyette, RN
Thomas R Konrad, PhD
Jennifer Lavista, BS
Robert Schwartz, MA


Florida Center for Medicaid & the Uninsured
College of Public Health and Health Professions
University of Florida
352/273-5059

Sponsored by
The Agency for Health Care Administration


Florida Center for Medicaid and the Uninsured
Shaping Healthcare m Policv


June, 2004







TABLE OF CONTENTS

Page

ICD-9 Algorithms for Identifying the Medicaid Sickle Cell 4
Disease Population

Table 1 Relevant ICD-9 codes for evaluating the Florida sickle 4
cell disease Medicaid recipients

Table 2 Estimates of the number of Medicaid beneficiaries with 5
sickle cell disease, Florida, calendar year 2000

Table 3 Variations in the estimated number of Medicaid beneficiaries 5

Table 4 Estimates of the population with sickle cell disease 6
in the state of Florida

Table 5 Estimates of the percentage of the sickle cell disease 7
population covered by the Florida Medicaid Program, 2000

Table 6 Florida Medicaid recipients with sickle cell disease (2001) 7

Table 7 Medicaid charges by age of beneficiaries (2001) 8

Figure 1 Florida contains 11 Community Health Purchasing Alliance 8
Regions



II. Survey of Hydroxyurea Therapy for sickle Cell Disease in Community- 9
Based and Academic Clinical Practices

Purpose 9

Methods 9

Table 8 Professional background and sickle cell disease related 10
Practice patterns of community hematologists/oncologists

Table 9 Percent of sickle cell disease patients treated with 10
Hydroxyurea

Table 10 Indications for hydroxyurea use by community hematologists/ 11
oncologists stratified by frequency of hydroxyurea use

Table 11 Importance of various criteria for not prescribing hydroxyurea 11
When it might otherwise be indicated

Results 12








Page


III. Improving the Use of Hydroxyurea: Development of a Clinical 12
Assessment Tool and Implementation of a Clinical trial to
Determine Physician Acceptability

Methods 12

IV. Development of a Patient Educational Video to enhance the Use of 13
Hydroxyurea

V. Recommendations for a Florida Disease Management Initiative 16
For Patients with Sickle Cell Disease

1. Clinical guidelines/pathway for hospital-based management of 16
sickle cell painful episode

2. Health care transition from pediatric to adult-oriented health care 17

3. Optimizing the use of hydroxyurea therapy for symptomatic patients 18

4. Facilitation of case management through consultation with sickle cell 18
disease experts

Clinical vignettes 19


Appendix A

Sickle Cell Patient Encounter Form

Introduction to the Hydroxyurea Clinical Practice Tool

Cover Letter for Hydroxyurea Survey

Hydroxyurea Clinical Practice Tool

Patient Log for UF Sickle Cell Disease Hydroxyurea Project

Appendix B

Physician's Orders

Clinical Pathway







I. ICD-9 Algorithms for Identifying the Medicaid Sickle Cell Disease Population

Please see the June 2003 Florida Center for Medicaid and Uninsured report by Lottenberg
et al.: Assessing the prevalence of Sickle Cell Disease in Florida Medicaid beneficiaries using
data from the Florida Medicaid Files (p 3-6) for the initial report. The relevant data are included
for this report.

Estimating the Number of Medicaid Beneficiaries with Sickle Cell Disease

Sickle cell disease is a term that encompasses a group of inherited hemoglobin
disorders which include hemoglobin S concentrations that are sufficient to cause sickling and
disease manifestations under conditions routinely encountered by affected patients. In Florida,
the most common form of the disease is Hemoglobin SS (also identified as sickle cell anemia).
Other genotypes falling within the category of sickle cell disease are typically double
heterozygote conditions including Hemoglobin SC, Hemoglobin S/3 thalassemia, Hemoglobin
SD, Hemoglobin SOArab. Sickle cell trait is the "carrier" state with approximately 50%
Hemoglobin S and 50% of the normal hemoglobin A which usually confers no major adverse
health consequences.

TABLE 1 Relevant ICD-9 codes for evaluating the Florida sickle cell disease
Medicaid recipients

Description ICD-9 code

Sickle cell trait 282.5

Sickle cell anemia 282.6

Sickle cell anemia, unspecified 282.60

Hb- S disease without mention of crisis 282.61

Hb-S with mention of crisis 282.62

Sickle cell/ Hb C disease 282.63

Thalassemias 282.4

We examined data from the Florida Medicaid program for the following fiscal years:
1997-1998; 1998-1999; 1999-2000; 2000-2001. Data from the eligibility files were linked to
claims files for inpatient, outpatient, emergency rooms, long-term care and pharmacy claims.
A beneficiary was defined as a sickle cell case if that specific individual was eligible for receipt
of services at any time during the year 2000, and had had also received a target diagnosis
during any of the four fiscal years on any type of claims.


Three different combinations of target ICD-9 codes were employed:

A narrow definition, i.e., 282.62 which is defined as Hb-S disease with mention of crisis;







A mid-range definition expands the narrow definition to include 282.61 which is defined as Hb-
S disease without mention of crisis.
A broad definition expands the mid-range definition to include 282.4 which includes
Thalassemia-Hb-S disease, but also includes Thalassemias without associated Hb-S.
A very broad definition expands the previous mid-range definition to include 282.60 which is
defined as sickle cell anemia, unspecified.
Table 2 displays the estimates based on analysis of this file.

Table 2 Estimates of the number of Medicaid beneficiaries with sickle cell disease,
Florida, Calendar Year 2000

Broad
Narrow Mid -range Dx Very Broad Dx
Dx Dx (282.62, 282.61 or (282.62, 282.61 or
(282.62) (282.62 or 282.61) 282.4) 282.60)
2,655 3,268 4,560 6,192

It should be noted that there is a quite sizeable increase in the estimated population
when either the Thalassemias (282.4) or the undifferentiated sickle cell disease code (282.60)
is included. Another piece of information, available from the claims files, is the presence and
number of claims for sickle cell trait, i.e., 282.5. Because it is impossible for an individual to
have both trait and disease, and because coding error might occur, we cross tabulated
individuals in Table 3 according to the number of trait claims that were generated on these
individuals over the 4-year period. It is evident, from the results displayed in Table 2 that
depending on the definition used, 10 to 15 percent of beneficiaries are likely to have a
contradictory combination of claims. Obviously some of these individuals might be persons
thought by their health care provider to have a trait but subsequently tested and found to have
disease, or more rarely thought to have disease, but subsequently proven to have trait.
However, further analyses of claims revealed that the temporal priority of claims with 282.5
with respect to claims with diagnoses of 282.62 or 282.61 or 282.60 were no more typical than
other arrangements, suggesting that inconsistent coding was present in about 5-10 percent of
cases. Unfortunately, we have no way of determining whether a specific individual with both
trait and disease codes on claims is a false positive or a false negative. Consequently we
chose to err on the side of inclusion and focus our attention on definitions that included
individuals with the targeted diagnoses, regardless of whether or not they had ever had a
282.5 claim associated with an episode of care.

Table 3 Variations in the estimated number of Medicaid beneficiaries

Broad
Cumulative Mid -range Dx Very Broad Dx
number of Narrow Dx (282.62 or (282.62 or
trait claims Dx (282.62 or 282.61 or 282.61 or
(282.5) (282.62) 282.61) 282.4) 282.60)
None 2,293 2,872 4,133 5,541
0-1 2,472 3,071 4,447 5,890
0-2 2,531 3,137 4,418 6,003
All cases 2,655 3,268 4,560 6,192







Estimating the Population of Florida with Sickle Cell Disease


In this section we attempt to estimate the prevalence of SCD population in the State of
Florida. We used 2000 census data and a previously published algorithm to estimate the
population with SCD. We chose to assess the prevalence of SCD according to a previously
published algorithm (Sprinkle RH, Hynes DM, Konrad TR. Is universal neonatal
hemoglobinopathy screening cost-effective? Arch Ped & Adol Med. May, 1994;148:461-469).
This information was applied to the State of Florida's year 2000 Census Data
(URL:http://www.labormarketinfo.com/census2000/C2SS/c2ss.htm, accessed on March 24,
2002). The results are displayed in Table 3.
This algorithm uses the widely accepted figure of 1:450 for the African American
population as a prevalence estimate. In addition, we estimated that individuals of Hispanic
ethnicity in Florida might have a somewhat elevated risk of SCD and used the figure of 1:3600.
This was based on comparable estimates from Puerto Rico and upon an examination of the
composition of population, especially in South Florida where Hispanic populations from Cuba,
Puerto Rico, the Dominican Republic, and other Caribbean islands are likely to have more than
a nominal presence of persons of African ancestry. It should be noted that our estimates make
the same assumptions about any census undercount, as do the official census statistics.

Table 4 Estimates of the population with sickle cell disease in the state of
Florida, 2000.

Florida Estimated affected
Population Rate persons
Black 2,471,730 1: 450 5,493
Hispanic 2,682,715 1: 3600 745
Overall 6,238


By using the Medicaid generated estimates as a numerator and estimates based on the
2000 census data as a denominator, we can conclude that the Medicaid program has a
significant, probably a majority, penetration of the Sickle Cell population in the State of Florida.
We can also make some deductions about how realistic our various definitions of affected
Medicaid beneficiaries are, because the number of affected Medicaid beneficiaries cannot
exceed the total population. Thus, for example, both the broad and very broad definitions are
likely to incorporate information from some false positives, it is likely that at a minimum, 40
percent of Floridians with Sickle Cell disease are enrolled in the Medicaid program. The upper
limit is likely to be in the range of 60-70 percent. Our mid-range estimate of 52.4 percent,
which estimates that 3,268 Medicaid beneficiaries have SCD, appears to be the most
reasonable one and will serve as the basis for our further studies which break down utilization
of services and pharmaceuticals by demographic and geographic factors.







Table 5 Estimates of the percentage of the sickle cell disease population covered
by the Florida Medicaid Program, 2000

SCD Patients Narrow Mid-range Broad Dx Very Broad Dx
(est) (282.62) (282.62 & (282.62, (282.62, 282.61
282.61) 282.61 or or 282.60)
282.4)

6,238 2,655 3.268 4.560 6,192
42.6% 52.4% 73.1% 99.3%

The ICD-9 selection algorithm used for this study was the mid-range definition of SCD
(282.61/282.62). Visual inspection of the top 300 of patient files rank ordered according to
resource utilization costs revealed there were recipients included in the cohort with the
diagnosis of hemophilia (ICD-9 code: 286.0). It is inferred these are included by miscoding and
these recipients were removed from the files included for the analysis.

Table 6

Florida Medicaid Recipients with Sickle Cell
Disease (2001)


Characteristic of Number (%)
recipients
Age (years)
0-15 2038 (57.5)
16-25 744 (21.0)
26-35 365 (10.3)
>35 400 (11.3)

Sex
Female 1873 (52.8)







Figure 1


Florida Contains 11 Community Health
Purchasing Alliance Regions









HILLSBOROUGH MANA ARDE os M CIN








Group Charges Charges to Capita Charges toES
CHARLOTTE BEACH








Table 7
Medicaid Charges by Age of Beneficiaries
(2001)

Age Number Mean Aggregate Per Percent of
Group Charges Charges to Capita Charges to
($) Medicaid ($) Cost Medicaid
Ratio
All 16+ 1509 12,421 18,743,279 1.000 100

16-20 427 14,997 6,403,719 1.207 34
21 -25 317 12,254 3,884,518 0.987 21
26-30 213 11,055 2,354,715 0.890 13
31-35 152 13,305 2,022,360 1.071 11
36- 40 159 10,597 1,684,923 0.853 9
41-45 106 9,859 1,045,054 0.794 6
46-50 66 10,371 684,486 0.835 4
50+ 69 9,616 663,504 0.774 4







II. Survey of Hydroxyurea Therapy for Sickle Cell Disease in Community-Based and
Academic Clinical Practices


Purpose: The efficacy of hydroxyurea (HU) in treatment of adults with sickle cell disease
(SCD) has been demonstrated in a major multicenter clinical trial and its benefit has been
further supported by reports from medical centers with interest in SCD. However, there
remains concern that HU is underutilized in the management of symptomatic SCD. The
objective of this study is to develop a clinical practice tool for the use of HU by community-
based physicians. Prior to the development of this tool, a survey was sent to practicing
community and university affiliated/based hematologist/oncologists to gain insight into the
patterns of HU use in the treatment of SCD.

Methods: A 27-item 4-page questionnaire was developed and mailed to Florida and North
Carolina hematologists/oncologists (H/Os). The goal of this questionnaire was to collect data
about physicians' professional background, characteristics of the SCD patient population as
well as indications for prescribing HU and management strategies used for patients on HU.
Data analysis consisted of comparing responses from community-based H/Os to a subset of
H/Os practicing at university based or university-affiliated hospitals and caring for a minimum
of 3 SCD patients per month (academic H/Os). The results were then used to develop a
clinical practice tool that can be used to evaluate if patients are candidates for HU and to guide
the management of patients on HU therapy.







Table 8 Professional background and sickle cell disease related practice patterns
of community hematologists/oncologists

Characteristic Percent
Professional background
Finished medical school before 1975 28
Finished medical school in 1985 or later 29
Finished fellowship before 1985 44
Finished fellowship in 1995 or later 16
Not fellowship trained 0
Currently practice hematology and 94
oncology
Board certified in hematology and 46
oncology
Attend Am. Soc. of Hematology meetings 59
Attend other hematology seminars 59
Practice in Florida 78
Practice in North Carolina 22
Sickle Cell Practice Patterns
See fewer than one SCD patient per 43
month
See 6 or more SCD patients per month 8
Has fewer than one SCD pt/mo in hospital 57
Cares for own hospitalized SCD patients 54
Uses medicine service for SCD patients 48
Uses hem/onc service for SCD patients 21
Uses HU for 10% or more of SCD pts 55
Uses NIH guidelines to manage SCD 35
patients




Table 9 Sickle cell disease patients treated with hydroxyurea by community
hematologists/oncologists

Percent of SCD
patients treated with Number* Percent


hydroxyurea
under 10% 75
10-30% 32
31-60% 33
61-90% 18
over 90% 8
Total 166
*18 physicians did not answer this question


45
20
20
11
5
100.0











Table 10 Indications for hydroxyurea use by community hematologists/oncologists
stratified by frequency of hydroxyurea use


Percent
of H/Os
Indications (N=156)
>3 painful crises/year 76%
narcotic use for pain 58%
acute chest syndrome 43%
stroke history 40%
symptomatic severe anemia 31%
priapism 27%
low hemoglobin F levels 29%
ankle ulcers 19%
renal failure 7%
pulmonary hypertension 7%
other criterion 5%
elevated white cell count 3%


Table 11 Importance of various criteria for not prescribing hydroxyurea when it
might otherwise be indicated (community hematologists/oncologists)

Reason for not prescribing HU Percent Percent Percent
rating "Not rating rating "Very
Important' "Important' Important'
Compliance 9 28 62

Contraception, pregnancy issues 20 39 40

Patients' anticipation of side effects 28 56 16

Patient's age 49 36 14

Cost 41 45 14

Concern about carcinogenic potential 60 29 11

Doubt effectiveness 59 36 4








Results: There were 184 community H/O respondents and 30 academic H/O who met the
criteria of seeing at least 3 SCD patients/month. Most community H/Os reported seeing
relatively few SCD patients in their practices; 74% saw less than 2 per month and 57% had
less than 1 SCD patient hospitalized/month. Relatively few community H/Os referred patients
to a specialized consultation center prior to initiating HU therapy. Our survey listed 11
potential criteria for placing patients on HU. Most frequently, invoked criteria by community
H/Os were greater than 3 painful crises per year (76%), chronic pain requiring frequent
narcotics (58%) and acute chest syndrome (43%). These were also the top 3 criteria used by
academic H/Os who more often prescribed HU for acute chest syndrome (70% vs. 43%, p
006). Of the remaining indications, severe anemia was also cited more often by academic
H/Os (60% vs 40%, p =. 04) as a reason for prescribing HU. Criteria for increasing HU dosing
were similar for both groups. There was no difference in the monitoring of routine laboratory
tests, however academic H/Os more frequently followed red cell MCV values (90% vs. 36%, p
=. 001) and hemoglobin F levels (90% vs.77%, p =. 005). Concerns expressed by both groups
for not prescribing HU when otherwise indicated included compliance issues, lack of
appropriate contraception, doubts about effectiveness, and patient's concern of potential side
effects. Only 35% of the community H/Os indicated that they used NIH published guidelines in
the management of their SCD patients. Based on the results of this survey, we have
developed a hydroxyurea clinical practice tool to help increase consideration of HU use in
patients with appropriate clinical indications. In addition information addressing benefits,
potential risks, dosing recommendations, guidelines for monitoring therapy, and strategies to
measure compliance will be included.



III. Improving the Use of Hydroxyurea: Development of A Clinical Assessment
Tool and Implementation of a Clinical Trial to Determine Physician
Acceptability

Methods

An extensive literature review on the use of hydroxyurea in the treatment of patients with sickle
cell disease was carried out. All clinical trials and summations of the results as provided by the
Cochrane Review (insert title) were evaluated. The National Library of Medicine PubPed
literature search using "hydroxyurea" and "sickle cell disease" as the key words was used to
identify all relevant literature. The clinical assessment tool was developed with the following
subject areas: 1) criteria for identifying patients that are potential candidates for receiving
hydroxyurea therapy, 2) provisions for the physician with relevant information for the sickle cell
patient and his/her family, 3) guidelines on how to initiate therapy and the necessary baseline
laboratory evaluations, 4) guidelines on how to monitor therapy and escalate the dose, 5)
information on how to address lack of clinical response. The initial draft of the tool was
developed by input from local academic hematologists, sickle cell disease nurse specialists,
and pharmacists. In addition, selected community hematologists/oncologists and
hematology/oncology fellow trainees were asked to provide input. The document was modified
according to these recommendations and the clinical assessment tool was then sent out for
formal review by experts in sickle cell disease hydroxyurea (including physicians directly
involved in the major multicenter clinical trial of hydroxyurea [University of Florida Institutional
Review Board] approval was obtained prior to this mailing). The clinical assessment tool was
refined based on these key recommendations provided by these individuals. The clinical







practice assessment tool, patient encounter forms, and a patient log were reviewed by the
University of Florida IRB and approved for use in a community physician trial to determine the
acceptability of the instrument. Clinical sites throughout the state of Florida have been
identified and clinical assessment tools and other resources have been sent out to 6 group
practices. The period of testing will be from June 15 September 30, 2004. The utility of the
instrument in managing sickle cell patients and optimizing hydroxyurea therapy will be
assessed by tabulating results from the patient encounter form, an end of the project
questionnaire and phone interviews of the physicians participating in the clinical trial.

See appendix A for the following:

Sickle Cell Patient Encounter Form

Introduction to the Hydroxyurea Clinical Practice Tool

Cover Letter for Hydroxyurea Survey

Hydroxyurea Clinical Practice Tool

Patient Log for UF Sickle Cell Disease Hydroxyurea Project



IV. Development of a Patient Educational Video to Enhance the Use of Hydroxyurea


Background
Hydroxyurea is a chemotherapy drug that has been proven by clinical trials to reduce
the amount of pain crisis, hospitalizations, and episodes of acute chest syndrome in sickle cell
patients that respond to it. It was FDA-approved in 1998 and is the only drug at this time that
can change the natural history of sickle cell disease. There are associated risks, so patients
need to be adequately informed to weigh the benefits and adverse effects.
Starting a chemotherapy drug is not a decision to be taken lightly. The choice is one
that may need to be thought over at home, or discussed with family members. Patients may
receive pamphlets to learn more about the drug at home. Yet, according to results of the 1993
National Adult Literacy Survey, only half of adult Americans have literacy skills that are at most
limited. Written education materials will not inform this large population. A patient education
video may be an effective way to communicate the possible benefits of hydroxyurea. Patient
education videos have been an effective format for educating patients, although the practice
is relatively new. It is uncertain whether patient education videos will be an efficient method of
communicating issues surrounding hydroxyurea therapy with the sickle cell disease patient
population.
Problems in Literacy
Poor functional health literacy is common among patients who have low educational
attainment, and among older patients and racial and ethnic minorities. Health literacy is
defined as a measure of a patient's ability to perform basic reading and numerical tasks
required to function in the health care environment. Poor adherence and high hospitalization
rates among people with low literacy add $30 to 73 billion to the annual health care bill. Poor
functional health literacy is independently associated with poor self-rated health, poor
understanding of one's medical condition and its management, and higher utilization of







healthcare services. Although the reasons for poor health literacy are not clear, it is likely that
ineffective communication in the health care environment plays a role.
A person who is illiterate is probably not an informed health care consumer. If the
patient is frightened, embarrassed, or not savvy enough to ask the right questions, the patient
is apt to ignore their treatment plan. This could have severe consequences.
Patient Education Videos
Educational videos may be a superior form of intervention for the delivery of information
to patients in general, especially those with poor literacy skills. Videos provide multiple
messages through non-verbal and representational communication. Educational videos are
also time efficient in the outpatient setting, are easily incorporated into busy health care
settings, and can be taken home by the patient for repeat viewings. This is important,
especially when dealing with a predominantly African American population who makes many
health decisions with the help of family members. Patient education videos allow for family
members to receive accurate first hand information so they can help patients make informed
decisions. These important choices will influence an individual's health behavior, utilization of
health services, and physical and psychological well-being.
Patient education videos have been successful in encouraging women to screen
themselves for cancer. Although most of the study participants had been taught how to
engage in self breast-examinations previously, the information had not been retained
sufficiently. Knowledge about the importance of screening and breast cancer risks clearly
improved with the use of patient videos. The video's impact on long term knowledge and skills
are not known, but the short-term gains are apparent.
Research studies conducted on women's breast examination behaviors proved that the
African American community is influenced more by testimonials from people who are similar to
themselves. Seeing a model similar to oneself accomplishing difficult tasks is more convincing
than observing those who are different achieve success. African American women who
watched videos of same-race female models practicing breast examinations were more likely
to believe that practice was effective than those who watched videos with different-race
models. The African American women perceived advice from African American physicians as
more credible than those of other races. The study's results indicate that using age and race
sensitive video programs positively influence outcomes, both in terms of knowledge gains and
increased breast self examination ability.
A review of patient educational material on sickle cell disease and hydroxyurea therapy
was conducted, including pamphlets, videos and websites. Individuals with expertise in health
and science communication, as well as video production, worked with academic hematologists
to address the subject matter and presentation format of the video. In addition, patient
educational material pertaining to medical conditions other than sickle cell disease was
investigated. Formative interviews were performed with key individuals involved in providing
health care services to patients with sickle cell disease. Through the perspectives of both the
patient and health care providers the goal of this video is to provide the SCD patient with
enough information to enable further effective discussion with the prescribing physician
concerning the benefits and risks of HU therapy. Three patients with SCD who were currently
receiving HU were chosen to give their testimonials for the video. A physician opinion expert
with extensive experience in the care of sickle cell disease patients as well as involvement in
clinical trials with hydroxyurea was chosen to discuss how the medication works in sickle cell
disease and to provide an overview of benefits and risks. In addition, another physician who is
a strong sickle cell disease advocate and involved in a large urban sickle cell program, was
chosen to address how patients can talk to physicians about issues surrounding treatment with
hydroxyurea. These interviews are planned to take place within the next two months.







The camera interviews will be reviewed and a rough script will be created through the
use of editing. The initial video product will be reviewed by the project director and other
physicians with expertise in sickle cell disease to assure content validity. Subsequently,
several patient focus groups will be carried out to judge the effectiveness of the video. The
focus group will provide group discussions that will offer direct evidence about similarities and
differences in the participants' opinions and experiences. Refinement of the video will be
carried out based on the information gained from the focus groups. After further editing
approximately 500 copies of the patient educational video will be produced. They will be
distributed through physicians' offices as well as by the Sickle Cell Disease Association of
Florida community outreach coordinators in three selected regions of Florida. Followup data
will be obtained by telephone interviews of physicians and surveys of patients to determine the
effect on the patients' understanding of hydroxyurea therapy and the potential impact on
treatment decisions.


References

1. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs AMA (1999).
"Health literacy: report of the Council on Scientific Affairs." JAMA, 281, (552-557).
2. Anderson, Ronald B., & McMillion, Priscilla Y. (1995). "Effects of Similar and Diversified
Modeling on African American Women's Efficacy Expectations and Intentions to Perform
Breast Self-Examination". Health Communication, 7(4), 327.
3. Baker, D.W., Parker, R.M., Williams, M.V., Clark, W.S & Nurss, J. (1997). "The
relationship of patient reading ability to self-reported health and use of health services." Am. J.
Public Health, 87, (1027-1030).
4. Baker, D.W., Parker, R.M., Williams, M.V.,& Clark, W.S. (1998). "Health literacy and the
risk of hospital admission." J. Gen. Intern. Med, 13, (791-798).
5. Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change.
Psychological Review, 84, 191-215.
6. Dunn, Jeff, Steginga, Suzanne K.; Rose, Pauline; Scott, Jenn; Allison, Roger (2004).
"Evaluating patient education materials about radiation therapy." Patient Education &
Counseling, 52(3), 325.
7. Gillis, A. (1993). "Determinants of a health-promoting lifestyle: an integrative review." J.
Adv. Nurs, 18, 45-353.
8. Kalichman, S.C. &. Rompa, D. (2000). "Functional health literacy is associated with
health status and health-related knowledge in people living with HIV-AIDS." J. Acquir. Immune
Defic. Syndr, 25, (337-344).
9. Morgan, David L. (1997). "Focus groups as qualitative research, second edition."
Qualitative Research Methods Series, vol. 16.
10. National Heart, Lung, and Blood Institute (1995). "Patient fact sheet: The multicenter
study of Hydroxyurea in Sickle Cell Anemia (MSH)."
http://www.nhlbi.nih.gov/health/public/blood/sickle/mshnews.htm, April, 2004.
11. Onel, C. Hamond, J.H. Wasson, B.B. Berlin, M.G. Ely, V.P. Laudone (1998).
"Assessment of the feasibility and impact of shared decision making in prostate cancer."
Urology, 51, 63-66.
12. Smith, Linda S., (2003). "Help! My patient's illiterate." Nursing, 33(11).
13. Thomas, A. Deary, E. Kaminski, D. Stockton and N. De Zueew. (1999). "Patients'
preferences for video cassette recorded information: effect of age." Eur. J. Cancer Care, 8, 83-
86.







14. Weiss, B.D, Hart, G, McGee, D.L & D'Estelle, S. (1992). "Health status of illiterate adults:
relation between literacy and health status among persons with low literacy skills." J. American
Board. Family Practice, 5, (257-264).
15. Williams, M.V, Davis, T., Parker, R.M & Weiss, B.D. (2002). "The role of health literacy in
patient-physician communication." Family Medicine, 34, (383-389).
16. Williams, M.V., Baker, D.W., Honig, E.G., Lee, T.M. & Nowlan, A. (1998). "Inadequate
literacy is a barrier to asthma knowledge and self-care." Chest, 114, (1008-1015).
17. Williams, M.V., Baker, D.W., Parker, R.M & Nurss, J.R. (1998). "Relationship of functional
health literacy to patients' knowledge of their chronic disease: a study of patients with
hypertension and diabetes." Arch. Intern. Med, 158, (166-172).
18. Wilson, Jennifer F. (2003). "The crucial link between literacy and health." American College
of Physicians, 139(10), (875-878).
19. Wood, Robin Y. Duffy, Mary E.; Morris, Selma J.; Carnes, Jennifer E. (2002). "The Effect
of an Educational Intervention on Promoting Breast Self-Examination in Older African
American and Caucasian Women."; Oncology Nursing Forum, 29(7), 1081.


V. Recommendations for a Florida Disease Management Initiative for Patients with
Sickle Cell Disease

1. Clinical Guidelines/Pathway for Hospital-Based Management of Sickle Cell
Painful Episode

Moderate to severe sickle cell painful episodes are treated in the hospital setting using
opioid analgesics. The painful episode represents the most common reason for hospital
admission and often is a prodrome for more serious consequences such as acute chest
syndrome or multi-organ failure. Hospitals with sizable sickle cell disease populations typically
will use clinical pathways/guidelines for treatment of the condition, and literature is available to
incorporate evidence-based approaches to patient management (see references). These
pathways can easily be adapted to smaller hospitals, as pain management represents a
priority for the medical inpatient services and sickle cell disease-specific interventions are
readily available. In this report we provide the results of a collaborative effort of the University
of Florida College of Medicine and Shands Hospital-UF in Gainesville in the development and
implementation of a clinical pathway with standardized physician order forms for adult sickle
cell disease patients.

The participating groups involved in this project included the Shands Hospital Pain
Committee, nursing services of the Medicine units, hospital pharmacy, and physicians
participating in the care of adult sickle cell disease patients.

The following reference sources were used to develop the materials:

1) Guideline for the Management of Acute and Chronic Pain in Sickle Cell Disease. APS
Clinical Practice Guidelines Series #1 Glenview, IL. American Pain Society.
2) The Management of Sickle Cell Disease, Fourth Edition, NIH Publication No. 95-
2117,2002.
3) Guidelines for Standard of Care of Acute Painful Episodes in Patients with Sickle Cell
Disease. Developed by Samir K. Ballas, MD, Timothy M. Carlos, MD, Carlton Dampier,
MD and the Guidelines Committee, Commonwealth of Pennsylvania, Department of Health.







4) Pain Episode, Sickle Cell Information Center Guidelines. The Georgia Comprehensive
Sickle Cell Center at Grady Health System. The Sickle Cell Foundation of Georgia, Inc.
Emory University School of Medicine Department of Pediatrics, Atlanta, Georgia.
5) Sickle Cell Disease in Children and Adolescents: Diagnosis, Guidelines for the
Comprehensive Care, and Protocols for Management of Acute and Chronic Complications.
Mountain States Regional Genetic Services Network, November, 1999.


There are several components to the SCD orders and guidelines:
The physician uses the Inpatient Admission Orders when the SCD patient is admitted to
the inpatient unit.
The Clinical Pathway is for nursing services to use to track daily progress of the SCD
patient during their hospital stay.
The inpatient Weaning/Transition Protocol is used by the physician and nursing staff to
insure an orderly switch from IV to oral pain medications in preparation for discharge and
outpatient follow-up in clinic.

Members of the participating groups met on a regular basis to review and modify the
orders and guidelines. Individual members of the group took draft versions of the orders and
guidelines to colleagues in their specialty areas to get feedback. Once a consensus was
reached on the final version of the orders and guidelines it was sent to the hospital forms
committee for review and approval.

Prior to placing the hospital approved orders and guidelines on designated inpatient
units, a series of inservices were conducted with nursing and administrative support staff. Also,
the medical director of the adult SCD program briefed physicians on the use of the orders and
guidelines at one of their patient care meetings.

After the orders had been in use for ninety days, the adult SCD nurse specialist
requested and received written feedback from the physicians and nurses on ways to improve
the orders and guidelines. The orders and guidelines were modified and sent back to the
hospital forms committee for approval.

See appendix B for the current version of the orders and guidelines.

There are several components to the SCD orders and guidelines:
The physician uses the Inpatient Admission Orders when the SCD patient is admitted
to the inpatient unit.
The Clinical Pathway is for nursing services to use to track daily progress of the SCD
patient during their hospital stay.
The Inpatient Weaning/Transition Protocol is used by the physician and nursing staff
to ensure an orderly transition from intravenous to oral pain medications in preparation for
discharge and outpatient follow-up in clinic.


2. Health Care Transition from Pediatric to Adult-Oriented Health Care

The state of Florida has made great strides in providing adequate care for infants and
children with sickle cell disease. The well established newborn screening program identifies at
risk infants and provides a mechanism to assure timely referral to an established







hematology/oncology center with expertise in sickle cell disease. These centers take
advantage of the impressive results of evidence-based therapeutic intervention. Key features
of the management program include the early institution of prophylactic penicillin therapy and
the use of the recently approved conjugate pneumococcal vaccine. These interventions
prevent the life-threatening invasive pneumococcal infection, which accounted for substantial
infant mortality. Additional advances include the use of transcranial Doppler studies to identify
children at risk for their first stroke and the use of prophylactic red blood cells transfusions for
those infants. In addition, chronic transfusion of red blood cells has proved affective as
secondary stroke prevention. There have also been recent clinical trials demonstrating that
hydroxyurea therapy is effective for pediatric patients. These approaches and others utilized in
the comprehensive care of children with sickle cell disease have substantially improved
survival. A June 2004 publication from a major sickle cell center reveals that over 85% of
children with sickle cell disease receiving care in such a program survive to age 18.

The improved survival for patients with complications of sickle cell disease portends
increasingly complex medical problems with co-morbidities. The challenges facing these
patients are compounded by the lack of equivalent hematology centers for sickle cell patients
that age out of pediatric care. National Institute of Health sponsored sickle cell programs
support state of the art care for adults as well as children. However, there are only ten such
funded centers in the United States and none of which are in Florida. In the experience of the
project director and in discussions with community based hematologists/oncologists
throughout Florida, these practice settings are often not well suited for the optimal
management of adult sickle cell disease patients. Furthermore, adult patients do not have the
ancillary professional support (nursing, psychological, and social) that are available through
the pediatric programs.

Our analysis of the Medicaid sickle cell disease recipient data feels that the adolescent
and young adult population accounts for substantial costs of resource utilization (see Section
I, Table 7). The project director in collaboration with Dr. John Reiss and Mr. Robert Gibson of
the University of Florida Institute for Child Health Policy have evaluated the opportunity for a
health care transition program focused on patients with sickle cell disease. Interventions
would follow a needs assessment and transition training in care coordination would address
specific problems. Components of the program would include: 1) consultative services from
selected experts in sickle cell disease to utilize telemedicine for internet based approaches, 2)
healthcare provider web-based training and resources based on available clinical guidelines,
3) procure transition training for young adults with sickle cell disease and their family members,
4) health care coordination potentially provided through the Sickle Cell Disease Association of
Florida outreach coordinator network.


3. Optimizing the Use of Hydroxyurea Therapy for Symptomatic Patients Please
see Sections III and IV

4. Facilitation of Case Management through Consultation with Sickle Cell
Disease Experts

As sickle cell disease patients age out of pediatric care, there is fragmentation in their
medical management. Florida does not have a formal program to address the needs of older
adolescents and adult patients with sickle cell disease. Our analyses through discussions with
hematologists/oncologists, primary care physicians, representatives of the Florida Sickle Cell







Disease Association, and patients reveal that there are an inadequate number of adult-
oriented practitioners with expertise in the management of the complexities of sickle cell
disease available. A health care delivery model that would potentially address this problem
would be a network of primary care physicians (i.e. internists and family physicians) that have
readily available consultative services from sickle cell disease experts and clinical guidelines
(e.g. web-based and teleconference resources [see 2002 and 2004 Florida Center for
Medicaid and the Uninsured reports by R. Lottenberg]) to provide ongoing preventive health
care measures and emergent health care.

The following clinical vignettes are examples of patients referred to an academic
hematologist with special interests in sickle cell disease (the project director) and provide
insights into the opportunities for assisting community-based physicians in improving health
care.



Case 1: A 44-year-old African American woman with Hb SS referred for assistance in
management of frequent pain episodes related to her sickle cell disease. The patient's history
and assessment showed a pattern of multiple blood transfusions and frequent use of
meperidine (Demerol) for pain control. The patient was informed about the benefits and risks of
hydroxyurea therapy. It was recommended that the patient start hydroxyurea and
recommendations for appropriate dosing and monitoring were provided to the physician. It was
recommended to avoid the use of blood transfusions for pain control or asymptomatic anemia.
It was also recommended that the patient be placed on a long acting opioid medication (slow
release morphine) rather than using meperidine.

Case 2: A 22-year-old African American woman with Hb SS was referred for assistance in
management of complications of iron overload related to multiple blood transfusions prescribed
for the history of stroke from her sickle cell disease. A detailed discussion took place with the
patient and her mother about the patient's cardiac disease secondary to the iron overload
related to the large number of previous blood transfusions. The discussion also included
weighing the added risk to continuing transfusions vs. giving consideration to discontinuing the
administration of red blood cells and using hydroxyurea therapy for secondary stroke
prophylaxis. It was also recommended to continue using iron chelation therapy and to begin a
phlebotomy program if the patient's hemoglobin level would permit. A lengthy discussion with
the referring physician took place and the consultant is continuing to be involved in patient
management (communication by telephone and letters).


Case 3: A 21-year-old African American woman with Hb SS and second trimester pregnancy is
referred for evaluation and treatment recommendations. She had been admitted to a local
hospital on several occasions where she had been treated for pneumonia and sickle cell
disease pain episodes. During these admissions the patient had received numerous blood
transfusions. The patient was educated and instructed on proper hydration, use of pain
medications that are safe in pregnancy and the need to adhere to scheduled appointments.
The patient and her physicians are informed of the clinical evidence supporting the
recommendation to avoid prophylactic red cell transfusion in pregnancy without complications.
An ongoing involvement of the high-risk obstetrics group is assured.







Case 4: A 31-year-old Hispanic male with Hb SS disease is referred for assistance with pain
management and evaluation for possible hip surgery. The patient had documented avascular
necrosis of the right hip due to his sickle cell disease. The patient was informed about the
options of conservative management of the hip problem vs. surgery. The patient's primary care
physician received information on optimizing outpatient pain management and giving
consideration to a phlebotomy program due to the elevated hemoglobin level. Arrangements
for collaboration between the consultant and the orthopedic surgeon were put in place so that
if surgery is contemplated appropriate pre- and peri-operative care can be delivered.


Case 5: A 30-year-old African American woman with hemoglobin SS referred for assistance
with treatment of her SCD and specifically the use of hydroxyurea. The patient had a history of
multiple hospital admissions, approximately once a month over the last five years for painful
episodes and several acute chest syndromes. The patient was educated and instructed on
proper hydration, pain medication and the use of hydroxyurea. The importance of compliance,
attaining the maximum tolerated dose, and the results of the definitive multi-center clinical trial
supporting its benefit were reviewed in detail. The patient acknowledged a better
understanding of hydroxyurea therapy and a willingness to adhere to the recommended
treatment program.







Appendix A


Sickle Cell Patient Encounter Form

We are providing the clinical assessment tool to a select panel of physicians who are caring for
sickle cell patients throughout the state of Florida. Our intent is to examine carefully whether and
how this clinical assessment tool is used by a busy practitioner like you. We hope that the
information provided will be useful to you and your patients.

We would like you to answer these brief questions about each SCD patient in your practice
encountered during the pilot project time period. Please circle your response.

Hydroxyurea Clinical Practice Tool YES NO Does not
apply in
this case
Did you use the assessment tool with this patient? YES NO
I used the tool to help me decide about starting HU YES NO DNA
therapy with a patient
I used the tool to monitor a patient who was already on YES NO DNA
HU therapy
I used the tool to terminate HU therapy YES NO DNA

The tool helped me decide whether or not my patient fit YES NO DNA
criteria for HU therapy
The tool helped me discuss HU risks and benefits with my YES NO DNA
patient


Did you initiate HU therapy with this patient? YES NO
The tool helped me explain to my patient what to expect YES NO DNA
with HU therapy
The tool helped me explain to my patient about side effects YES NO DNA
of HU therapy


IF this patient was already on HU was the tool used for YES NO
dose adjustment?
Information about the laboratory parameters for dose YES NO DNA
adjustment was clear
The tool was helpful in assessing whether or not the dose YES NO DNA
was effective
Information about the laboratory tests, frequency of YES NO DNA
testing, and critical values was helpful to me in
making the decision to change the monitoring of HU
therapy


IF patient was already on HU was the tool used to YES NO
monitor therapy or compliance?
I used the tool to assess patient compliance with my YES NO DNA
prescribed dosage
I used the tool to help measure the effectiveness of HU YES NO DNA
therapy








Introduction to the Hvdroxvurea Clinical Practice Tool


Hydroxyurea is effective in the treatment of sickle cell disease (see literature references).
Hydroxyurea therapy may be underused in the management of symptomatic patients. Our earlier
research suggested that community-based hematologists/oncologists in Florida would like more
information on how to use hydroxyurea more effectively and appropriately. This clinical practice
tool was developed in response to that perceived need. We hope you find it useful.





Core Reference Material (summaries available upon request)

The Management of Sickle Cell Disease (fourth edition); NIH Publication No. 02-2117 July
2002: 162-5. (www.nhlbi.nih.gov/health/prof/blood/sickle/sc mnqt.pdf)

Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators
of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia.
Charache S, Terrin ML, Moore RD, et al. N EngI J Med 1995, 332:1317-22.

Effect of hydroxyurea on mortality and morbidity in adult sickle cell anemia: risks and
benefits up to 9 years of treatment. Steinberg MH, Barton F, Castro O, et al.
JAMA 2003, 289:1645-51.

The role of hydroxyurea in sickle cell disease. Halsey, C and Roberts, IAG.
British Journal of Hematology 2003, 120:177-186.






UNIVERSITY OF
FLORIDA
College of Medicine 1600 S.W. Archer Road
Health Science Center PO Box 100277
Department of Medicine Gainesville, FL 32610-0277
Division of Hematology/Oncology (352) 392-3000
Fax (352) 392-8530

June 11,2004

Dr. XXXX
Address
Address
Address

Dear Dr. XXXX:

Thank you for agreeing to participate in our project assessing the utility of a
hydroxyurea clinical practice tool. We are providing the clinical assessment tool to a select
panel of physicians who are caring for sickle cell patients throughout the state of Florida.
Our intent is to examine carefully whether and how this clinical assessment tool is used by
a busy practitioner like you. We hope that the information provided will be useful to you and
your patients. This is part of a research study funded by the state of Florida. We would like
to complete the collection of data by September 30, 2004.

Enclosed are Notebook A with the Hydroxyurea Clinical Practice Tool and
Patient Encounter Forms. Notebook B contains the Sickle Cell Disease Patient
Log. PLEASE NOTE THAT THE LIST OF PATIENT NAMES IS TO BE USED BY
YOUR CLINICAL PRACTICE ONLY AND NOT PROVIDED TO ME OR THE
RESEARCH TEAM. The purpose of this log is to assure that each sickle cell patient
in your practice has been considered for evaluation with the clinical practice tool.
We will collect the Patient Encounter Forms from you at the end of the study. If you
have any questions or comments concerning the clinical practice tool or data entry
on the forms please do not hesitate to contact me at 352-392-2976 or by e-mail at:
lottenr(@medicine.ufl.edu I cannot provide compensation for your efforts, but will
provide you the results of this pilot study. I thank you in advance for your
contribution.

Sincerely yours,



Richard Lottenberg, MD
Professor of Medicine
Division of Hem/Onc
University of Florida
College of Medicine








Hydroxyurea Clinical Practice Tool


Richard Lottenberg, MD
University of Florida Adult Sickle Cell Disease Program




I. Is the patient a candidate for hydroxyurea therapy?

For patients not enrolled in a chronic transfusion program: age 16 or older, with sickle cell
disease (Hemoglobin SS, S/betao thalassemia, S/beta* thalassemia, or SC)


1. Has the patient been admitted to the hospital > 3 times in a 12-month period of time for
the treatment of sickle cell pain?
2. Has the patient ever been diagnosed with severe or recurrent acute chest
syndrome?

If the answer is YES to either of these questions:

* For patients with Hemoglobin SS or S/betao- thalassemia proceed to section II regarding
patient counseling, as these patients may benefit from hydroxyurea.

* Patients with Hemoglobin S/beta thalassemia or Hemoglobin SC are potential candidates.
Please call Dr. Lottenberg at 352-392-3000 for consultation.

Additional clinical considerations that may mean a patient is a candidate:

3. Does the patient require chronic narcotic therapy for control of sickle cell pain?
4. Does the patient have symptomatic anemia requiring periodic transfusion?
5. Has the patient had a stroke but cannot be transfused?
6. Has the patient had recurrence of other vaso-occlusive episodes (e.g. priapism)?


If the answer is YES to any of questions 3-6:
Please call Dr. Lottenberg at 352-392-3000 for consultation.










II. Information Session for Patient and Family: Weighing the benefits vs. harms of
hydroxyurea therapy
1. Frequent painful episodes (crises) are associated with an increased risk for adverse
outcomes
acute chest syndrome
multi-organ failure syndrome
hospital-related complications/infections
early mortality

2. Adult patients with recurrent acute chest syndrome
Risk for repeat episodes of acute chest syndrome
Risk for chronic pulmonary complications
Experience increased mortality compared to patients without acute chest
syndrome

3. Hydroxyurea has been shown to be efficacious [results of the Multicenter Study of
Hydroxyurea in Sickle Cell Anemia (MSH)]
Reduction in painful episodes
Reduction in the occurrence of acute chest syndrome
Reduction in frequency of hospitalizations
Reduction in transfusion requirement

4. Review the MSH 9-year follow up results
Reduction in mortality for patients taking hydroxyurea
No increased incidence of cancer for patients taking hydroxyurea

5. Review importance of compliance to therapy recommendations
Not all patients respond to hydroxyurea
Requirement to take medication on a daily basis
Requirement to adhere to prescribed clinical follow-up

6. Requirement for continuing contraception (women and men)
Possible teratogenicity of hydroxyurea

7. Review potential side-effects
Consequences of myelosuppression
Possible nausea, hair loss, increased skin/nail pigmentation, skin ulceration
Possible weight gain
Risk for cancer/leukemia uncertain but appears small
see item (4.) above
publications outside the MSH trial limited to 4 case reports ?
relationship to treatment
monitoring of MSH trial participants is continuing
If the patient decides to start hydroxyurea therapy proceed to Section III.






III. Initiation of Hydroxyurea Therapy


STEP 1: Baseline Laboratory Evaluation

1. Complete Blood Count with WBC differential and reticulocyte count
2. Hemoglobin electrophoresis (elevation of Hemoglobin F level is NOT a contraindication to
treatment)
3. For women: Pregnancy test
4. Renal and liver function tests


STEP 2: Initiation and monitoring of therapy



1. Counsel patient regarding need for contraception (men and women) and careful follow up
2. Starting dosage (500 mg capsules): 15 mg/kg/day [5-10 mg/kg/day if renal or hepatic
dysfunction]
3. Prescribe folate 1 mg/day
4. Monitor CBC every 2 weeks
Maintain absolute neutrophil count > 2,500/uL
Maintain platelets > 95,000/uL
5. Monitor renal and liver function tests every 4 weeks during dose escalation
6. Escalate daily dose 500 1000 mg every 6-8 weeks [maximum: 35 mg/kg/day if no
evidence of toxicity]. Note optimal dose may require alternating daily doses, e.g.
1000/1500 mg QOD.
7. Once desired effect is achieved blood counts and can be monitored every 4-8 weeks
8. If sub-optimal clinical response: Monitor red cell MCV and Hb F levels for evidence of
laboratory response and compliance (recommended interval: every 6 8 weeks)


Endpoints for Dose Escalation

reduction in sickle cell pain frequency and/or severity
OR
evidence of myelosuppression





IV. Lack of Clinical Response for Sickle Cell Pain Indication


1. Laboratory findings indicative of hydroxyurea effect:
Increased Hb F level
Increased red cell MCV
Increased hemoglobin level compared to baseline

2. Measures of compliance:
Pharmacy records
Pill counts
Patient diary
Increased red cell MCV

Certain patients will not have a clinical response to hydroxyurea even if compliant. There
may or may not be any of the laboratory value changes indicated above. A trial period of 6-
12 months of therapy with dose escalation as outlined is recommended prior to
discontinuing therapy for lack of clinical response as described above.





PATIENT LOG FOR UF SICKLE CELL DISEASE HYDROXYUREA PROJECT


CLINICAL PRACTICE
TOOL USED (y/n)


NAME


DATE




Annendix R

SHANDS
at the University of Florida
Gainesville, Florida 32610

Physician's Orders


Patient Name:


MR#:


Date Time Adult Sickle Cell Disease Pain Episode: Inpatient Admission Orders page 1 of 3
(All orders with a El must be checked to be activated)


1. Admit to: [ Unit 74 ] Unit 55 Other:
2. Medical Diagnosis
Sickle Cell Pain Episode
Condition: ] Good ] Fair O Serious L Critical
3. Service:
Intern Pager#
Resident Physician Pager #
Attending Physician Pager #
4. Contact: Adult Sickle Cell Nurse Specialist, ext. 88026 and leave voicemail with patient name and
room # for post admission follow-up.
5. Allergies: [ NKDA [] Other:
6. RN to Obtain and Record Admission Height and Weight: Ht inches Wt kg
7. Vital Signs: VS with 02 Sat check q4hr, VAS (0-10) Pain Score q4hr
8. ] Continuous pulse oximetry (required for basal PCA)
9. Notify House Officer if patient exhibits:
a) T greater than 38.5'C
b) R greater than 26 or less than 10
c) 02 sats less than 90% or pt's baseline
d) Respiratory depression; call before administering naloxone (NARCAN)
e) SBP greater than 170 or less than 90, DBP greater than 105 or less than 55
f) HR greater than 120 or less than 50
g) UOP less than 30 mL/ hr
h) inadequate pain relief
10. Diet: Encourage PO fluids
11. Activity: ] Bedrest [] Bedrest with bathroom privileges ] Other:
12. Chest X-Ray: ] 1 view O PA / LAT Reason:
13. Admission Labs (if not drawn in ED): O CBC & Diff [ Reticulocyte count E] Renal Battery

FO [ l_
14. O Incentive Splrometry 3 times per hour while awake. Instruct patient on proper use.


(continued on next page)


Distribution: Medical Record Be sure to fax to Pharmacy.
Rev. 11/25/03


PS33389-12(







SHANDS
at the Universityof Florida
Gainesville, Florida 32610
Physician's Orders


Patient Name:


MR#:


Date Time Adult Sickle Cell Disease Pain Episode: Inpatient Admission Orders page 2 of 3
(All orders with a C must be checked to be activated)


15. [ Accurate I&O
16. [ IVF hypotonicc solution): D51/2 NS + mEq KCI @ __ mL / hr x 24 hours, then
D51/2 NS @ 100 mL
] IVF hypotonicc solution): Other
17. Medications:
Discontinue.Hydrdxytrea:(if applicable)
O docusate sodium (COLACE) 100 mg PO BID
[ folic acid 1 mg PO daily
E] diphenhydramine (BENADRYL) 25 mg PO q4hr PRN pruritis
O_ promethazine (PHENERGAN) 25 mg IV q4hr PRN for N/V
O] MAALOX 15 30 mL PO q4hr PRN dyspepsia
O senna 1 2 tabs PO at bedtime PRN constipation
[] Titrated naloxone (NARCAN) 0.04 mg / mL for respiratory depression (call MD before administration)
Dilute 0.4 mg in 10 mL NS. Administer 0.5 mL IV then evaluate for resolution. Repeat q 2 min PRN.
__. Olyiitrated naloxdned(NARCAN) .0.04 mig/mL solutiodi should be used io resolve respiratory depression
because undiluted naloxori (NARCAN) will reverse all opioid analgesic effects.
O Other:
O] Other
[3 Other:
17a. Medications:
Opioid loading dose prior to PCA initiation
Timeframe: Administer immediately after initial pain assessment. If patient is uncomfortable with
a VAS score greater than 3 and if patient has not received an oploid loading dose within the last
60 minutes, then administer the following:
n morphine mg IV (0.1 mg / kg up to max 10 mg) for 1 dose
OR
If morphine contraindicaled for patient use hydromorphone dosing guidelines.
OE hydromorphone (DILAUDID) mg IV (0.01 mg / kg up to max 2 mg) for 1 dose



(continued on next page)


Distribution: Medical Record Be sure to fax to Pharmacy.
Rev. 11/25/03


PS33389-1203








SHANDS
at the University of Florida
Gainesville, Florida 32610

Physician's Orders


Patient Name:


MR#:


Date Time Adult Sickle Cell Disease Pain Episode: Inpatient Weaning / Transition Protocol STEP 1 page 1 of 2
(All orders with a C] must be checked to be activated)


Adult SCD Pain Episode Weaning Protocol The purpose of this weaning protocol is to provide e
adequate patient analgesia while transitioning the patient from parenteral PCA opioids to oral long-acting
and short-acting opioids. This protocol is designed to follow the Adult SCD Pain Episode: Admission
Orders in conjunction with the Adult SCD Pain Episode Clinical Pathway. Before this weaning protocol
should be initiated, an adult SCD patient must have a VAS (0-10) Pain Score less than or equal to 3 or at
pt's reported level of acceptable / functional pain VAS score for a minimum duration of 24 hours on PCA
basal + demand. Generally, the weaning process has three steps / phases, thus the reason for three sets of
Adult SCD Pain Episode: Inpatient Weaning /Transition Orders. The pt's individualized plan of care and
associated time frames for weaning must be based upon his / her pain management outcomes. The desired
weaning / transition outcomes are: 1) a pt's VAS Pain Score less than or equal to 3 or at put's reported level
of acceptable / functional pain VAS score and 2) patient discharge from the hospital.
1. Vital Signs: Continue VS with 0O sat check q4hr, VAS (0-10) Pain Score q4hr
2. E] Continuous Pulse Oximetry (required for basal PCA).
E Discontinue continuous pulse oximetry when basal rate of PCA discontinued.
3. Call House Officer if patient exhibits:
a) T greater than 38.5'C,
b) R greater than 26 or less than 10,
c) O, sats less than 90% or patient's baseline,
d) Respiratory depression call before administering naloxone (NARCAN),
e) SBP greater than 170 or less than 90, DBP greater than 105 or less than 55,
f) HR greater than 120 or less than 50,
g) UOP less than 30 mL/hr,
h) inadequate pain relief,
i) excessive sedation
4. Diet: ]_ Encourage PO fluids
5. Activity:
6. X-rays: ] CXR [ Other:
7. Labs: 0 CBC & Diff q ___ Reticulocyte count q __ Renal Battery q
] __]___ E_ [-
8. IVF hypotonicc solution): @ mL / hr ] Medlock
9. Continue Accurate I&O
10. Continue Incentive Spirometry 3 times per hour while awake. Instruct patient on proper use.



(continued on next page)


Distribution: Medical Record Be sure to fax to Pharmacy.
8/27/03


PS48032-0803













SHeANDS
at the University of Florida


The Clinical Pathway is a general guideline
for the plan of care. Patent care continues
"o feaoIre r, aiidJal'llalton based on
patient needs and response.


CLINICAL PATHWAY
PATH TITLE: Adult Sickle Cell Disease Pain Episode
(DRG 395, LOS 4.4 Days)
SERVICE: Adult Medicine/Hematology/Oncology Patient Name: MR P
ATTENDING:
ALLERGY ALERT: *Note all allergies and check to ensure patient receives no medication allergic to. Call service to obtain alternative medications.
Interventions documented in patient's Medical Record.


CARE ELEMENT PRESENTATION PHASE

CARE UNIT ED .
CONSULTS Sickle Cell Nurse Specialist, ext. 88026 and leave voicemail with patient name and room #
TESTS/LABS X-rays: CXR
Labs: Min eval- CBC & Diff, Retic count, Renal Battery. Add. Eval, if suggested by H&P: Urine
C&S, ECG, ABG, Blood cultures if T>38.5' C
ASSESSMENTS Baseline VS, 02 Sats, VAS (0-10) pain score then q 1hr assessments.
Notify MD for vital signs outside the Believe put's reported level of pain. Assess for pain intensity (VAS), location, duration, aggravating
following parameters: and alleviating factors.
* Temp above 38.5-C SBP 90-17 Cont. pulse ox (required for basal PCA)
* HR-50.120 DBP-55-10! Accurate l&O
. UOP below 30 mLrhr R 10-26 Assess hydration status q 12 hrs
* VAS greater than 3 or Excessive Check skin integrity q shift
patient's acceptable sedation
functional score Inadequate
.02 Sats greater than analgesia
90% or pt's baseline
TREATMENTS Hypotonic IVF: Maintenance IVF 1 L bolus @250 mL/hr, then decrease rate as ordered
IS 3x per hr W/A
O2via N/C PRN
MEDICATIONS Pain management:
Opiod loading dose(IV preferred) PO or SC if no IV access
Morphine (use DILAUDID if morphine contraindicated) PCA basal + demand q 15 min lockout.
Titrate to keep VAS pain score < 3.
PRN meds for comfort, side effects
D/C Hydroxyurea (if applicable)
PAINISYMPTOM CONTROL If inadequate pain relief after 4 hrs, anticipate admission to Unit 74 or 55.
If adequate pain relief after 4 hrs, anticipate D/C from ED with 10 day supply of long & short acting
opiods & F/U appt. In Adult Hem/Onc Outpt Clinic within 10 days.
Monitor, report & treat opiod side effects
ACTIVITY Bedrest w/BRP
NUTRITION Diet as ordered
Encourage PO fluids if no IV access
PSYCHOSOCIAL Identify communication barriers
COMMUNICATION Assess mood, affect, perceived stress,adaptive behavior, coping skills/ support
Involve pt/family in care, decision-making, and realistic goal setting
INDIVIDUAL Needs/Problems Assess for unmet needs. Provide support and make appropriate referrals.

D/IC EDUCATION PLANNING Educate on possible precipitating factors
FlU appt. in Adult Hem/Onc Outpt. Clinic within 10 days.
Pt to retum to ED if has increased pain, chest pain, SOB, T>38.50C
OUTCOMES Document if met/not met on Clinical Pathway Outcome Tool


COPYRIGHT @ 2003 SHANDS at the University of Florida
All rights reserved. This publication is protected by copyright. No part of the publication may be reproduced in any form or by any means,
including photocopying, or utilized by any information storage and retrieval system without written permission from SHANDS at the University of
Florida. Contact: Nursing Education Office @ (352) 265-0548.







HANDS
at the University of Florida


CLINICAL PATHWAY
PATH TITLE: Adult Sickle Cell Disease Pain Episode
(DRG 395, LOS 4.4 Days)
SERVICE: Adult Medicine/Hematology/Oncology
ATTENDING:


Patient Name:


M.R.


CARE ELEMENT WEANING TRANSITION WEANING TRANSITION
STEP 1 PHASE STEP 2 PHASE
CARE UNIT Unit 74 or 55 Unit 74 or 55
CONSULTS

TESTSILABS Labs: CBC & Diff Labs: CBC & Diff

ASSESSMENTS VS, 02 sats, VAS (0-10) pain score, sedation level VS, 02 sats, VAS (0-10) pain score, sedation
Notify MD for vital signs outside the q 4hrs level q 4hrs
following parameters: Cont. pulse ox (required for basal PCA) I &0
. Temp above 38.50C SBP 90-171 &0 Assess hydration status q 12 hrs
.HR -50-120 DBP 55-10! Assess hydration status q 12 hrs Check skin integrity q shift
. UOP below 30 mL/hr R 10-26
* VAS greater than 3 or Excessive Check skin integrity q snift
patient's acceptable/ sedation
functional score Inadequate
* 02 Sats greater than analgesia
90% or put's baseline
TREATMENTS Hypotonic IVF: Maintenance 1VF as ordered Hypotonic IVF: Decrease maintenance IVF
IS 3x per hr W/A rate with possible conversion to Medlock, if
2 via N/C P taking PO well
V IS 3x per hr WIA
02 via N/C PRN
MEDICATIONS Pain management: Pain management:
Start PO long acting opiod (Morphine SR or Continue Demand PCA
Oxyconbn) while pt on basal + demand PCA Start short acting opiod (Oxycodone) PO q
4h PRN for breakthrough pain
D/CbasalPCA 12 24 hrs after start of PO long 4h PRN for breakthrough pain
D/C basal PCA 12- 24 rs after start of PO ong NSAIDs (optional) if tolerated
acting opiod Administer PRN meds to control side effects,
NSAIDs (optional) if tolerated increase comfort
PRN meds for side effects, increase comfort
PAINISYMPTOM CONTROL Incorporate non-pharmacologic pain management Incorporate non-pharmacologic pain
techniques such as relaxation, imagery, music, etc. management techniques.
Monitor, report & treat opiod side effects Monitor, report & treat opiod side effects
When basal component PCA D/C'd & pt. exhibits When pt. has adequate analgesia ith demand
adequate analgesia from PO long acung opiods + component of PCA, long acting and short
demand PCA for min. duration of 24 hrs, RN to component of PCA, long acting and short
acting PO opoids for min. duration of 24 hrs,
notify MD to initiate Adult Sickle Cell Disease RN to n otify MD to in at
Pain Episode: Weaning I Transition Protocol RN to notify MD to initiate
Step 2. e Adult Sickle Cell Disease Pain Episode:
p Weaning I Transition Protocol Step 3.
ACTIVITY As tolerated As tolerated
NUTRITION Diet as ordered Diet as ordered
Encourage PO fluids Encourage PO fluids
PSYCHOSOCIAU Assess put's mood, affect, perceived stress levels, Assess put's mood, affect, perceived stress
COMMUNICATION adaptive behavior, coping skills and support levels, adaptive behavior, coping skills and
systems qd support systems qd
Involve pt/family in care, decision-making, and Involve pt/family in care, decision-making, and
realistic goal setting realistic goal setting
INDIVIDUAL NeedslProblems Assess for unmet needs. Provide support and Assess for unmet needs. Provide support and
make appropriate interdisciplinary &/or community make appropriate interdisciplinary &/or
referrals. community referrals.
DIC EDUCATION PLANNING Address lifestyle changes no smoking, medication Address lifestyle changes no smoking,
compliance, adequate hydration, health medication compliance, adequate hydration,
maintenance health maintenance
Document education completed on IPFER Document education completed on IPFER
Continue D/C planning assessment (securing
Begin D/C planning assessment (transportation D/C meds, DME if needed)
S and destination arrangements) D/C m E if n
OUTCOMES Document if met/not met on Clinical Pathway Outcome Tool


Revised 09/10/03


SCD 2003


Page 3 of 4




Annendix R

SHANDS
at the University of Florida
Gainesville, Florida 32610

Physician's Orders


Patient Name:


MR#:


Date Time Adult Sickle Cell Disease Pain Episode: Inpatient Admission Orders page 1 of 3
(All orders with a El must be checked to be activated)


1. Admit to: [ Unit 74 ] Unit 55 Other:
2. Medical Diagnosis
Sickle Cell Pain Episode
Condition: ] Good ] Fair O Serious L Critical
3. Service:
Intern Pager#
Resident Physician Pager #
Attending Physician Pager #
4. Contact: Adult Sickle Cell Nurse Specialist, ext. 88026 and leave voicemail with patient name and
room # for post admission follow-up.
5. Allergies: [ NKDA [] Other:
6. RN to Obtain and Record Admission Height and Weight: Ht inches Wt kg
7. Vital Signs: VS with 02 Sat check q4hr, VAS (0-10) Pain Score q4hr
8. ] Continuous pulse oximetry (required for basal PCA)
9. Notify House Officer if patient exhibits:
a) T greater than 38.5'C
b) R greater than 26 or less than 10
c) 02 sats less than 90% or pt's baseline
d) Respiratory depression; call before administering naloxone (NARCAN)
e) SBP greater than 170 or less than 90, DBP greater than 105 or less than 55
f) HR greater than 120 or less than 50
g) UOP less than 30 mL/ hr
h) inadequate pain relief
10. Diet: Encourage PO fluids
11. Activity: ] Bedrest [] Bedrest with bathroom privileges ] Other:
12. Chest X-Ray: ] 1 view O PA / LAT Reason:
13. Admission Labs (if not drawn in ED): O CBC & Diff [ Reticulocyte count E] Renal Battery

FO [ l_
14. O Incentive Splrometry 3 times per hour while awake. Instruct patient on proper use.


(continued on next page)


Distribution: Medical Record Be sure to fax to Pharmacy.
Rev. 11/25/03


PS33389-12(







SHANDS
at the Universityof Florida
Gainesville, Florida 32610
Physician's Orders


Patient Name:


MR#:


Date Time Adult Sickle Cell Disease Pain Episode: Inpatient Admission Orders page 2 of 3
(All orders with a C must be checked to be activated)


15. [ Accurate I&O
16. [ IVF hypotonicc solution): D51/2 NS + mEq KCI @ __ mL / hr x 24 hours, then
D51/2 NS @ 100 mL
] IVF hypotonicc solution): Other
17. Medications:
Discontinue.Hydrdxytrea:(if applicable)
O docusate sodium (COLACE) 100 mg PO BID
[ folic acid 1 mg PO daily
E] diphenhydramine (BENADRYL) 25 mg PO q4hr PRN pruritis
O_ promethazine (PHENERGAN) 25 mg IV q4hr PRN for N/V
O] MAALOX 15 30 mL PO q4hr PRN dyspepsia
O senna 1 2 tabs PO at bedtime PRN constipation
[] Titrated naloxone (NARCAN) 0.04 mg / mL for respiratory depression (call MD before administration)
Dilute 0.4 mg in 10 mL NS. Administer 0.5 mL IV then evaluate for resolution. Repeat q 2 min PRN.
__. Olyiitrated naloxdned(NARCAN) .0.04 mig/mL solutiodi should be used io resolve respiratory depression
because undiluted naloxori (NARCAN) will reverse all opioid analgesic effects.
O Other:
O] Other
[3 Other:
17a. Medications:
Opioid loading dose prior to PCA initiation
Timeframe: Administer immediately after initial pain assessment. If patient is uncomfortable with
a VAS score greater than 3 and if patient has not received an oploid loading dose within the last
60 minutes, then administer the following:
n morphine mg IV (0.1 mg / kg up to max 10 mg) for 1 dose
OR
If morphine contraindicaled for patient use hydromorphone dosing guidelines.
OE hydromorphone (DILAUDID) mg IV (0.01 mg / kg up to max 2 mg) for 1 dose



(continued on next page)


Distribution: Medical Record Be sure to fax to Pharmacy.
Rev. 11/25/03


PS33389-1203








SHANDS
at the University of Florida
Gainesville, Florida 32610

Physician's Orders


Patient Name:


MR#:


Date Time Adult Sickle Cell Disease Pain Episode: Inpatient Weaning / Transition Protocol STEP 1 page 1 of 2
(All orders with a C] must be checked to be activated)


Adult SCD Pain Episode Weaning Protocol The purpose of this weaning protocol is to provide e
adequate patient analgesia while transitioning the patient from parenteral PCA opioids to oral long-acting
and short-acting opioids. This protocol is designed to follow the Adult SCD Pain Episode: Admission
Orders in conjunction with the Adult SCD Pain Episode Clinical Pathway. Before this weaning protocol
should be initiated, an adult SCD patient must have a VAS (0-10) Pain Score less than or equal to 3 or at
pt's reported level of acceptable / functional pain VAS score for a minimum duration of 24 hours on PCA
basal + demand. Generally, the weaning process has three steps / phases, thus the reason for three sets of
Adult SCD Pain Episode: Inpatient Weaning /Transition Orders. The pt's individualized plan of care and
associated time frames for weaning must be based upon his / her pain management outcomes. The desired
weaning / transition outcomes are: 1) a pt's VAS Pain Score less than or equal to 3 or at put's reported level
of acceptable / functional pain VAS score and 2) patient discharge from the hospital.
1. Vital Signs: Continue VS with 0O sat check q4hr, VAS (0-10) Pain Score q4hr
2. E] Continuous Pulse Oximetry (required for basal PCA).
E Discontinue continuous pulse oximetry when basal rate of PCA discontinued.
3. Call House Officer if patient exhibits:
a) T greater than 38.5'C,
b) R greater than 26 or less than 10,
c) O, sats less than 90% or patient's baseline,
d) Respiratory depression call before administering naloxone (NARCAN),
e) SBP greater than 170 or less than 90, DBP greater than 105 or less than 55,
f) HR greater than 120 or less than 50,
g) UOP less than 30 mL/hr,
h) inadequate pain relief,
i) excessive sedation
4. Diet: ]_ Encourage PO fluids
5. Activity:
6. X-rays: ] CXR [ Other:
7. Labs: 0 CBC & Diff q ___ Reticulocyte count q __ Renal Battery q
] __]___ E_ [-
8. IVF hypotonicc solution): @ mL / hr ] Medlock
9. Continue Accurate I&O
10. Continue Incentive Spirometry 3 times per hour while awake. Instruct patient on proper use.



(continued on next page)


Distribution: Medical Record Be sure to fax to Pharmacy.
8/27/03


PS48032-0803













SHeANDS
at the University of Florida


The Clinical Pathway is a general guideline
for the plan of care. Patent care continues
"o feaoIre r, aiidJal'llalton based on
patient needs and response.


CLINICAL PATHWAY
PATH TITLE: Adult Sickle Cell Disease Pain Episode
(DRG 395, LOS 4.4 Days)
SERVICE: Adult Medicine/Hematology/Oncology Patient Name: MR P
ATTENDING:
ALLERGY ALERT: *Note all allergies and check to ensure patient receives no medication allergic to. Call service to obtain alternative medications.
Interventions documented in patient's Medical Record.


CARE ELEMENT PRESENTATION PHASE

CARE UNIT ED .
CONSULTS Sickle Cell Nurse Specialist, ext. 88026 and leave voicemail with patient name and room #
TESTS/LABS X-rays: CXR
Labs: Min eval- CBC & Diff, Retic count, Renal Battery. Add. Eval, if suggested by H&P: Urine
C&S, ECG, ABG, Blood cultures if T>38.5' C
ASSESSMENTS Baseline VS, 02 Sats, VAS (0-10) pain score then q 1hr assessments.
Notify MD for vital signs outside the Believe put's reported level of pain. Assess for pain intensity (VAS), location, duration, aggravating
following parameters: and alleviating factors.
* Temp above 38.5-C SBP 90-17 Cont. pulse ox (required for basal PCA)
* HR-50.120 DBP-55-10! Accurate l&O
. UOP below 30 mLrhr R 10-26 Assess hydration status q 12 hrs
* VAS greater than 3 or Excessive Check skin integrity q shift
patient's acceptable sedation
functional score Inadequate
.02 Sats greater than analgesia
90% or pt's baseline
TREATMENTS Hypotonic IVF: Maintenance IVF 1 L bolus @250 mL/hr, then decrease rate as ordered
IS 3x per hr W/A
O2via N/C PRN
MEDICATIONS Pain management:
Opiod loading dose(IV preferred) PO or SC if no IV access
Morphine (use DILAUDID if morphine contraindicated) PCA basal + demand q 15 min lockout.
Titrate to keep VAS pain score < 3.
PRN meds for comfort, side effects
D/C Hydroxyurea (if applicable)
PAINISYMPTOM CONTROL If inadequate pain relief after 4 hrs, anticipate admission to Unit 74 or 55.
If adequate pain relief after 4 hrs, anticipate D/C from ED with 10 day supply of long & short acting
opiods & F/U appt. In Adult Hem/Onc Outpt Clinic within 10 days.
Monitor, report & treat opiod side effects
ACTIVITY Bedrest w/BRP
NUTRITION Diet as ordered
Encourage PO fluids if no IV access
PSYCHOSOCIAL Identify communication barriers
COMMUNICATION Assess mood, affect, perceived stress,adaptive behavior, coping skills/ support
Involve pt/family in care, decision-making, and realistic goal setting
INDIVIDUAL Needs/Problems Assess for unmet needs. Provide support and make appropriate referrals.

D/IC EDUCATION PLANNING Educate on possible precipitating factors
FlU appt. in Adult Hem/Onc Outpt. Clinic within 10 days.
Pt to retum to ED if has increased pain, chest pain, SOB, T>38.50C
OUTCOMES Document if met/not met on Clinical Pathway Outcome Tool


COPYRIGHT @ 2003 SHANDS at the University of Florida
All rights reserved. This publication is protected by copyright. No part of the publication may be reproduced in any form or by any means,
including photocopying, or utilized by any information storage and retrieval system without written permission from SHANDS at the University of
Florida. Contact: Nursing Education Office @ (352) 265-0548.







HANDS
at the University of Florida


CLINICAL PATHWAY
PATH TITLE: Adult Sickle Cell Disease Pain Episode
(DRG 395, LOS 4.4 Days)
SERVICE: Adult Medicine/Hematology/Oncology
ATTENDING:


Patient Name:


M.R.


CARE ELEMENT WEANING TRANSITION WEANING TRANSITION
STEP 1 PHASE STEP 2 PHASE
CARE UNIT Unit 74 or 55 Unit 74 or 55
CONSULTS

TESTSILABS Labs: CBC & Diff Labs: CBC & Diff

ASSESSMENTS VS, 02 sats, VAS (0-10) pain score, sedation level VS, 02 sats, VAS (0-10) pain score, sedation
Notify MD for vital signs outside the q 4hrs level q 4hrs
following parameters: Cont. pulse ox (required for basal PCA) I &0
. Temp above 38.50C SBP 90-171 &0 Assess hydration status q 12 hrs
.HR -50-120 DBP 55-10! Assess hydration status q 12 hrs Check skin integrity q shift
. UOP below 30 mL/hr R 10-26
* VAS greater than 3 or Excessive Check skin integrity q snift
patient's acceptable/ sedation
functional score Inadequate
* 02 Sats greater than analgesia
90% or put's baseline
TREATMENTS Hypotonic IVF: Maintenance 1VF as ordered Hypotonic IVF: Decrease maintenance IVF
IS 3x per hr W/A rate with possible conversion to Medlock, if
2 via N/C P taking PO well
V IS 3x per hr WIA
02 via N/C PRN
MEDICATIONS Pain management: Pain management:
Start PO long acting opiod (Morphine SR or Continue Demand PCA
Oxyconbn) while pt on basal + demand PCA Start short acting opiod (Oxycodone) PO q
4h PRN for breakthrough pain
D/CbasalPCA 12 24 hrs after start of PO long 4h PRN for breakthrough pain
D/C basal PCA 12- 24 rs after start of PO ong NSAIDs (optional) if tolerated
acting opiod Administer PRN meds to control side effects,
NSAIDs (optional) if tolerated increase comfort
PRN meds for side effects, increase comfort
PAINISYMPTOM CONTROL Incorporate non-pharmacologic pain management Incorporate non-pharmacologic pain
techniques such as relaxation, imagery, music, etc. management techniques.
Monitor, report & treat opiod side effects Monitor, report & treat opiod side effects
When basal component PCA D/C'd & pt. exhibits When pt. has adequate analgesia ith demand
adequate analgesia from PO long acung opiods + component of PCA, long acting and short
demand PCA for min. duration of 24 hrs, RN to component of PCA, long acting and short
acting PO opoids for min. duration of 24 hrs,
notify MD to initiate Adult Sickle Cell Disease RN to n otify MD to in at
Pain Episode: Weaning I Transition Protocol RN to notify MD to initiate
Step 2. e Adult Sickle Cell Disease Pain Episode:
p Weaning I Transition Protocol Step 3.
ACTIVITY As tolerated As tolerated
NUTRITION Diet as ordered Diet as ordered
Encourage PO fluids Encourage PO fluids
PSYCHOSOCIAU Assess put's mood, affect, perceived stress levels, Assess put's mood, affect, perceived stress
COMMUNICATION adaptive behavior, coping skills and support levels, adaptive behavior, coping skills and
systems qd support systems qd
Involve pt/family in care, decision-making, and Involve pt/family in care, decision-making, and
realistic goal setting realistic goal setting
INDIVIDUAL NeedslProblems Assess for unmet needs. Provide support and Assess for unmet needs. Provide support and
make appropriate interdisciplinary &/or community make appropriate interdisciplinary &/or
referrals. community referrals.
DIC EDUCATION PLANNING Address lifestyle changes no smoking, medication Address lifestyle changes no smoking,
compliance, adequate hydration, health medication compliance, adequate hydration,
maintenance health maintenance
Document education completed on IPFER Document education completed on IPFER
Continue D/C planning assessment (securing
Begin D/C planning assessment (transportation D/C meds, DME if needed)
S and destination arrangements) D/C m E if n
OUTCOMES Document if met/not met on Clinical Pathway Outcome Tool


Revised 09/10/03


SCD 2003


Page 3 of 4




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