摘要目的 建立我国大骨节病健康相关生存质量的架构,以期反映出大骨节病对患者生存质量的影响.方法 运用质性描述性研究,采用世界卫生组织(WHO)对健康及生存质量的定义发展半开放式问题,通过焦点团体访谈和面对面访谈,收集陕西省大骨节病患病率较高的病区麟游县、永寿县29名大骨节病专家和48名大骨节病患者的意见,并用WHO生存质量问卷(WHOQOL-100)的架构作为模板,用内容模板法分析访谈资料.结果 大骨节病健康相关生存质量架构包含了4个领域:身体活动能力、家庭/社会支持、经济、心理状态；反映在11个方面:疼痛与不适,身体功能与活动限制、饮食与睡眠、社会关系、对家庭责任的担忧、社会支持、经济状况、住房及周围环境、对外貌的担心、精神状况、总的健康状况;共有69个条目.结论 建立了大骨节病健康相关生存质量的架构,该架构凸显了大骨节病对患者生存质量的影响,特异性较强.

abstractsObjective To identify the framework for assessing health related quality of life(HRQOL) of Kaschin-Beck disease(KBD),in order to reflect the impact of KBD on quality of life in patients with the disease.Methods Qualitative descriptive research was adopted.Semi-open ended questions were developed by using the World Health Organization(WHO) definitions of health and quality of life.Group interview and face to face interviews were conducted on 48 patients with KBD and 29 health care experts on KBD in Linyou and Yongshou counties,Shaanxi province,which were higher prevalence areas of KBD.Content template analysis was conducted and the template was based on the WHOQOL-100's framework.Results The framework of HRQOL for KBD included four domains:physical activity,familial/social support,economic and psychological state.There were also eleven facets which were:pain and discomfort,physical function and activity limitation,diet and sleeping,social relationship,concerns of family responsibilities,social support,economic,housing and the surrounding environment,appearance concerns,mental health,and general state of health.The total entries were 69.Conclusions The framework for assessing HRQOL of KBD is established.The framework highlights the impact of KBD on the patients' quality of life with higher specificity.