Background and Aims PREMs are today a core asset to orient healthcare quality improvements. They are particularly relevant in clinical situations requiring frequent interactions between patients and the healthcare system, like inflammatory bowel disease (IBD). Indeed, IBD chronic care requires continuous therapies, psychological interventions and follow-ups. The characteristics of healthcare 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 healthcare and rooted in patients’ perspectives. Methods The WE-CARE IBD SCORE was developed and validated through a multi-stage process (qualitative and quantitative) and administered to 1176 patients with IBD. Psychometric evaluation included an assessment of internal consistency and factor analysis. Results The WE-CARE IBD SCORE is a short and self-administered questionnaire that includes six items assessing one unique dimension of “IBD patients-rooted 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 healthcare services. Conclusions The WE-CARE IBD SCORE contributes to the panorama of existing quality of care patient-reported measures by providing a patient-rooted, psychosocial perspective in the evaluation of a key aspect for chronic - and particularly for IBD patients - care.
- IBD quality of care
- patient engagement
- patient reported experience measure