Health related quality of life in sickle cell patients: the PiSCES project.
Health related quality of life in sickle cell patients: the PiSCES project.
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DOI：
10.1186/1477-7525-3-50
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发表时间：
2005-08-29
影响因子：
3.6
通讯作者：
Smith, Wally R
中科院分区：
文献类型：
--
作者：
McClish, Donna K;Penberthy, Lynne T;Smith, Wally R
背景：镰状细胞病（SCD）是一种与高发病率和死亡率增加相关的慢性疾病。镰状细胞病成人患者的健康相关生活质量 (HRQOL) 尚未得到广泛报道。 方法：我们对镰状细胞病流行病学疼痛研究 (PiSCES) 中的 308 名患者进行了 36 项简短的医疗结果研究，以评估 HRQOL。量表包括身体功能、身体和情感角色功能、身体疼痛、活力、社会功能、心理健康和一般健康。我们使用 t 检验将分数与国家标准进行比较，并使用方差分析和 Dunnett 检验与三个慢性病队列（哮喘、囊性纤维化和血液透析患者）进行比较，以与对照进行比较。我们还评估了 SCD 特定变量（基因型、疼痛、危机和利用）是否可以独立预测 SF-36 子量表，并使用回归控制社会人口统计学变量。 结果：SCD 患者在除心理健康之外的所有子量表上的得分均显着低于国家标准。除心理健康外，SCD 患者的 HRQOL 低于囊性纤维化患者。与哮喘患者相比，身体功能、角色功能和心理健康的得分相似，但身体疼痛、活力、社会功能和一般健康分量表的得分较差。与透析患者相比，镰状细胞病患者在身体角色和情绪角色功能、社会功能和心理健康方面得分相似，在身体疼痛、总体健康和活力方面较差，在身体功能方面较好。令人惊讶的是，除了活力之外，基因型并不影响HRQOL。然而，随着疼痛程度的增加，评分显着下降。结论：SCD 患者的健康相关生活质量比一般人群更差，而且一般来说，他们的评分与接受血液透析的患者最相似。从业人员应将其 HRQOL 视为严重受损。 SCD 的干预措施应将健康相关生活质量的改善视为重要结果。
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 physical role and 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.CONCLUSION: 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.