Health related quality of life in sickle cell patients: The PiSCES project

被引：175

作者：

McClish D.K. ^{[1
,2
]}

Penberthy L.T. ^{[2
]}

Bovbjerg V.E. ^{[3
]}

Roberts J.D. ^{[4
]}

Aisiku I.P. ^{[2
,5
]}

Levenson J.L. ^{[6
]}

Roseff S.D. ^{[7
]}

Smith W.R. ^{[2
]}

机构：

[1] Department of Biostatistics, Virginia Commonwealth University, Richmond, VA

[2] Division of Quality Health Care, Department of Medicine, Virginia Commonwealth University, Richmond, VA

[3] Department of Health Evaluation Sciences, University of Virginia, Charlottesville, VA

[4] Division of Hematology/Oncology, Department of Medicine, Virginia Commonwealth University, Richmond, VA

[5] Department of Emergency Medicine, Virginia Commonwealth University, Richmond, VA

[6] Department of Psychiatry, Virginia Commonwealth University, Richmond, VA

[7] Department of Pathology, Virginia Commonwealth University, Richmond, VA

来源：

Health and Quality of Life Outcomes | / 3卷 / 1期

关键词：

Cystic Fibrosis; Sickle Cell Disease; Bodily Pain; Sickle Cell Disease Patient; Scale Recalibration;

D O I：

10.1186/1477-7525-3-50

中图分类号：

学科分类号：

摘要：

Background: Sickle cell disease (SCD) is a chronic disease associated with high degrees of morbidity and increased mortality. Health-related quality of life (HRQOL) among adults with sickle cell disease has not been widely reported. Methods: We administered the Medical Outcomes Study 36-item Short-Form to 308 patients in the Pain in Sickle Cell Epidemiology Study (PiSCES) to assess HRQOL. Scales included physical function, physical and emotional role function, bodily pain, vitality, social function, mental health, and general health. We compared scores with national norms using t-tests, and with three chronic disease cohorts: asthma, cystic fibrosis and hemodialysis patients using analysis of variance and Dunnett's test for comparison with a control. We also assessed whether SCD specific variables (genotype, pain, crisis and utilization) were independently predictive of SF-36 subscales, controlling for socio-demographic variables using regression. Results: Patients with SCD scored significantly worse than national norms on all subscales except mental health. Patients with SCD had lower HRQOL than cystic fibrosis patients except for mental health. Scores were similar for physical function, role function and mental health as compared to asthma patients, but worse for bodily pain, vitality, social function and general health subscales. Compared to dialysis patients, sickle cell disease patients scored similarly on role, emotional role function, social functioning and mental health, worse on bodily pain, general health and vitality and better on physical functioning. Surprisingly, genotype did not influence HRQOL except for vitality. However, scores significantly decreased as pain levels increased. Conclusions: SCD patients experience health related quality of life worse than the general population, and in general, their scores were most similar to patients undergoing hemodialysis. Practitioners should regard their HRQOL as severely compromised. Interventions in SCD should consider improvements in health related quality of life as important outcomes. © 2005 McClish et al., licensee BioMed Central Ltd.

引用

页数：11

共 32 条

[1]

Pratt O.S., Thorington B.D., Brambilla D.J., Milner P.F., Rosse W.F., Vichinsky E., Kinney T.R., Pain in sickle cell disease: Rates and risk factors, N. Engl. J. Med., 325, pp. 11-16, (1991)

[2]

Pratt O.S., Brambilla D.J., Milner P.F., Rosse W.F., Milner P.F., Castro O., Steinberg M.H., Klug P.P., Mortality in sickle cell disease: Life expectancy and risk factors for early death, N. Engl. J. Med., 330, pp. 1639-1644, (1994)

[3]

Bonds D.R., Three decades of innovation in the management of sickle cell disease: The road to understanding the sickle cell disease clinical phenotype, Blood Rev., 19, pp. 99-110, (2005)

[4]

Thomas V.J., Taylor L.M., The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups, Br. J. Health Psychol., 7, pp. 345-363, (2002)

[5]

Fuggle P., Shand P.A., Gill L.J., Davies S.C., Pain, quality of life, and coping in sickle cell disease, Arch. Dis. Child, 75, pp. 199-203, (1996)

[6]

Kater A.P., Heijboer H., Peters M., Vogels T., Prins M.H., Heymans H.S., Quality of life in children with sickle cell disease in Amsterdam area, Ned. Tijdschr. Geneeskd., 143, pp. 2049-2053, (1999)

[7]

Stegenga K.A., Ward-Smith P., Hinds P.S., Routhieaux J.A., Woods G.M., Quality of life among children with sickle cell disease receiving chronic transfusion therapy, J. Pediatr. Oncol. Nurs., 21, pp. 207-213, (2004)

[8]

Strickland O.L., Jackson G., Gilead M., McGuire D.B., Quarles S., Use of focus groups for pain and quality of life assessment in adults with sickle cell disease, J. Natl. Black Nurses Assoc., 12, pp. 36-43, (2001)

[9]

Anie K.A., Steptoe A., Bevan D., Sickle cell disease: Pain, coping and quality of life in a study of adults in the UK, Br. J. Health Psychol., 7, pp. 331-344, (2002)

[10]

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