EngageMinds HUB - Consumer, Food & Health Engagement Research Center, Università Cattolica del Sacro Cuore, Milan, Italy.
Department of Psychology, Università Cattolica del Sacro Cuore, Milano, Italy.
J Crohns Colitis. 2021 Mar 5;15(3):349-357. doi: 10.1093/ecco-jcc/jjaa174.
Patient-reported experience measures [PREMs] are today a core asset to orientate health care quality improvements. They are particularly relevant in clinical situations requiring frequent interactions between patients and the health care system, like inflammatory bowel disease [IBD]. Indeed, IBD chronic care requires continuous therapies, psychological interventions, and follow-ups. The characteristics of health care services play an important role in the life of these patients and in their satisfaction with the care received. The aim of this study was to develop and validate an IBD-specific questionnaire [WE-CARE IBD SCORE] able to capture IBD patients' needs and priorities for their own health care and based on patients' perspectives.
The WE-CARE IBD SCORE was developed and validated through a multistage process [qualitative and quantitative] and administered to 1176 patients with IBD. Psychometric evaluation included an assessment of internal consistency and factor analysis.
The WE-CARE IBD SCORE is a short and self-administered questionnaire that includes six items assessing one unique dimension of 'IBD patient-reported high quality of care'. Psychometric evaluations demonstrate the reliability [Cronbach's alpha = 0.93] and validity [invariance to gender and diagnosis] of the questionnaire as an instrument able to detect and assess IBD patients' main psychosocial needs and priorities for receiving health care services.
The WE-CARE IBD SCORE contributes to the panorama of existing quality of care patient-reported measures by providing a patient-based, psychosocial perspective in the evaluation of a key aspect for chronic-and particularly for IBD patients-care.
患者报告体验测量（PROMs）如今是指导医疗质量改进的核心资产。它们在需要患者与医疗系统频繁互动的临床情况下特别相关，例如炎症性肠病（IBD）。实际上，IBD 的慢性护理需要持续的治疗、心理干预和随访。医疗服务的特点在这些患者的生活中以及他们对所接受护理的满意度方面起着重要作用。本研究旨在开发和验证一种 IBD 特异性问卷[WE-CARE IBD SCORE]，该问卷能够捕捉 IBD 患者对自身医疗保健的需求和优先事项，并基于患者的观点。
通过多阶段过程（定性和定量）开发和验证 WE-CARE IBD SCORE，并对 1176 名 IBD 患者进行了问卷调查。心理测量评估包括内部一致性评估和因子分析。
WE-CARE IBD SCORE 是一种简短的自我管理问卷，包含六个项目，评估“IBD 患者报告的高质量护理”的一个独特维度。心理测量评估表明，该问卷具有可靠性（Cronbach's alpha = 0.93）和有效性（性别和诊断不变性），能够检测和评估 IBD 患者的主要心理社会需求和对接受医疗服务的优先事项。
WE-CARE IBD SCORE 通过在评估慢性护理的关键方面（特别是 IBD 患者的护理）时提供基于患者的、心理社会的观点，为现有的患者报告的护理质量测量工具提供了补充。
