Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure
Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure
复制标题
DOI：
10.2147/prom.s144992
复制
发表时间：
2018-01-01
影响因子：
2.1
通讯作者：
Merkel, Peter A.
中科院分区：
文献类型：
--
作者：
Robson, Joanna C.;Dawson, Jill;Merkel, Peter A.
目的：抗神经细胞胞浆抗体（ANCA）相关性血管炎（AAVs）是一种多系统的小血管疾病。患者经历来自AAV及其治疗的不可逆损伤和心理影响。创建了一个国际合作，以调查AAV对健康相关的生活质量（HRQoL）的影响，并制定一个疾病特异性的患者报告的结果措施，以评估结果的重要性patient.Methods：患者与AAV从英国，美国和加拿大进行了采访，以确定显着的方面，HRQoL受AAV。该研究由一个指导委员会监督，其中包括四名患者研究合作伙伴。对受访者进行有目的的抽样，确保了一系列疾病表现和人口统计的代表性。归纳分析用于确定对患者重要的主题;这些主题在美国的自由列表练习中得到进一步证实。个别主题被重铸成候选项目，这是由患者仔细检查，通过认知访谈和试点收到的语言和translatability evaluation.Results：50访谈，进行饱和，与来自英国，美国和加拿大的患者，确定了55个个人的兴趣主题在七个广泛的领域：一般健康感知、对功能的影响、心理感知、社会感知、社会接触、社会角色和症状。个别主题被构建成> 100候选问卷项目，然后减少和细化到35候选items.Conclusion：这是最大的国际定性分析HRQoL在AAV的日期，结果已经巩固了发展的35个候选项目的疾病特异性，患者报告的结果问卷。
Objective: The antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific patient-reported outcome measure to assess outcomes of importance to patients.Methods: Patients with AAV from the UK, USA, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV. The study was overseen by a steering committee including four patient research partners. Purposive sampling of interviewees ensured representation of a range of disease manifestations and demographics. Inductive analysis was used to identify themes of importance to patients; these were further confirmed by a free-listing exercise in the US. Individual themes were recast into candidate items, which were scrutinized by patients, piloted through cognitive interviews and received a linguistic and translatability evaluation.Results: Fifty interviews, conducted to saturation, with patients from the UK, USA, and Canada, identified 55 individual themes of interest within seven broad domains: general health perceptions, impact on function, psychological perceptions, social perceptions, social contact, social role, and symptoms. Individual themes were constructed into > 100 candidate questionnaire items, which were then reduced and refined to 35 candidate items.Conclusion: This is the largest international qualitative analysis of HRQoL in AAV to date, and the results have underpinned the development of 35 candidate items for a disease-specific, patient-reported outcome questionnaire.