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ESTIMATE OF LONG TERM HEALTH CARE COSTS FOR ADULTS WITH PRADER-WILLI SYNDROME 

 Scheimann, Ann O.* and Whitman, Barbra Y.+

 Affiliations:

* Division of Pediatric Nutrition and Gastroenterology, Johns Hopkins School of Medicine
+ Department of Pediatrics, Saint Louis University School of Medicine

Introduction: Individuals with Prader-willi syndrome (PWS) require long term health care for health maintenance and treatment of co-morbidities arising from hyperphagia and hypogonadism.  Little information has been previously published regarding long term health care costs and quality of life for adults with PWS.

Materials and methods: Retrospective review of published data regarding cost of living expenses, obesity related co-morbidities and co-morbidities arising from hypogonadism was accrued via literature review.

Results:  Estimated annual costs (dollars):

Hypercholesterolemia 155 Hip fracture 7000-21000
Type II Diabetes 2025-2374 Sleep Apnea 3050-5720
Stroke  3171 Dental Care 1000
Hypertension 542 Behavioral management 6960
Leg Ulser 1000 Living costs 75321-117277

Annual cost for normal BMI PWS – $ 82,321-124,277

Annual cost for morbidly obese PWS  - $101,377 - 134,395 (no fracture or hospitalization.)

Conclusion:   The cost of care for individuals with PWS significantly increased by co-morbidities arising from obesity and hypogonadism.   

References:

1.  Hatton C, Emerson E, Robertson J, Henderson D, Cooper J.  The Quality and Costs of Residential Services for Adults with Multiple Disabilities:  A Comparative Evaluation, Research in Developmental Disabilities 1995; 16: 439-60.

2.  Johnell O.  The socioeconomic burden of fractures:  today and in the 21st century.  Am J Med; 1997: 103: 20s-23s.

3.  Kapur V, Blough DK, Sandblom RE, Hert R, DeMaine JB, Sullivan SD, Psaty BM.  The medical cost of undiagnosed sleep apnea.  Sleep, 1999; 22: 749-55. 

4.  Knobbe, CA, Carey, SP, Rhodes L, Horner RH.  Benefit-Cost Analysis of Community Residential versus Institutional Services for Adults with Severe Mental Retardation and Challenging Behaviors.  Am J MR 1995; 99: 533-541.

5.  Phillips T, Stanton B, Provan A, Lew R.  A study of the impact of leg ulcers on quality of life:  Financial, social and psychologic implications, J Amer Acad Derm 1995.

6.  Thompson D, Edelsberg J, Colditz G, Bird Ap, Oster G Lifetime Health and Economic Consequences of Obesity; Arch Int Med 1999; 159: 2177-2183.

7.  Whitman B. Long term health care costs for persons with PWS, 1997. 

8.  Wolf AM, Colditz GA.  Current Estimates of the Economic Cost of Obesity in the United States. Obes Res 1998; 6: 97-106


July 2002 

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