Gentile S, Delarozière J Ch, Fernandez C, Tardieu S, Devictor B, Dussol B, Daurès J P, Berland Y, Sambuc R
Laboratoire de santé publique EA3279 (Evaluation hospitalière-Mesure de la santé perçue), Faculté de médecine de Marseille.
Nephrologie. 2003;24(6):293-301.
Health related quality of life (HRQOL) indicators take into account the personal perception of health, and are proposed as an alternative for efficacy indicators in medical and therapeutic decision making. They provide, due to elaboration and validation of a questionnaire, a standardised assessment of the health status perception. This paper provides a review of a variety of HRQOL instruments developed for patients suffering end-stage renal disease (ESRD). Generic instruments are designed to be applicable in general population and disease-targeted instrument are potentially more sensitive to the characteristics of a specific population. Among HRQOL instruments, we found 4 generic questionnaires (the Sickness Impact Profile, the SF 36, the Nottingham Health Profile and the EQ-5D), 3 disease-targeted questionnaires developed for ESRD patient undergoing dialysis (the Kidney Disease Quality of Life instrument, the Kidney Disease Questionnaire and the Choice Health Experience Questionnaire), 1 questionnaire specific for ESRD patients (the HRQOL questionnaire), and 2 specific disease-targeted instruments for renal transplant (the Kidney Transplant Questionnaire and the ESRD Symptom Checklist-Transplantation Module). In France, very few studies on the quality of life of ESRD patients were published; no specific questionnaire validated in French is yet published.
健康相关生活质量(HRQOL)指标考虑了个人对健康的认知,并被提议作为医疗和治疗决策中疗效指标的替代指标。由于问卷的精心设计和验证,它们提供了对健康状况认知的标准化评估。本文综述了为终末期肾病(ESRD)患者开发的各种HRQOL工具。通用工具旨在适用于一般人群,而针对特定疾病的工具可能对特定人群的特征更敏感。在HRQOL工具中,我们发现了4种通用问卷(疾病影响量表、SF-36、诺丁汉健康量表和EQ-5D),3种为接受透析的ESRD患者开发的针对特定疾病的问卷(肾病生活质量工具、肾病问卷和选择健康体验问卷),1种针对ESRD患者的特定问卷(HRQOL问卷),以及2种针对肾移植的特定疾病工具(肾移植问卷和ESRD症状清单-移植模块)。在法国,关于ESRD患者生活质量的研究发表得很少;尚未发表经过法语验证的特定问卷。