Background Patients have an important role to play in communicating the impact of disease and the effectiveness of healthcare. Well-developed patient-reported experience measures (PREMs) can provide a clinically relevant and scientifically rigorous resource for including the patients’ perspective of their disease activity in decisions about their management.
Objectives Assess the validity and reliability of a Patient Reported Experience Measures (PREMs) questionnaire that can be used to measure self-defined important experiences and perspectives of inflammatory arthritis (RA) patients.
Methods The PREMs questionnaire was conceptualized based on frameworks used by the WHO Quality of Life tool, as well as the PRO measurement information system (PROMIS). Cognitive interviews were conducted with 94 inflammatory arthritis patients (diagnosed according to EULAR/ACR criteria 2010), with a range of severity and disease activity to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of physicians, nurses, health educators and OTs feedback, in addition to clinometric and psychometric methods. The latter included Rasch and internal consistency reliability analyses. The PREMs questionnaire was developed centered around 5 main categories: 1. Journey to diagnosis, 2. Impact of the disease on the patients’ everyday life, 3. knowledge about the disease, 4. the care in the hospital, and 5. patient education and aftercare (including what to do in case of exacerbation). After analysis for ordered response options, content analysis and semi-structured group discussion to cover these 5 categories, 36 questions were identified as the final item set. The routine clinic was used as a setting for the questionnaire evaluation. In a multicenter study, 264 patients were asked to complete the PROMs  as well as the PREMs questionnaires whilst sitting in the waiting area before being examined by the treating physician. Comprehensibility and reliability (using the Test-retest reliability (reproducibility) were assessed.
Results The tool was derived from RA patients, therefore establishing its face validity. The PREMs questionnaire was reliable as demonstrated by a high-standardized alpha (0.891-0.963). The questionnaire items correlated significantly (P< 0.01) with clinical parameters of disease activity, PROMs, self-helplessness and DAS-28 score supporting its construct validity. The domain of impact of arthritis correlated significantly (P< 0.01) with HRQOL score as well as disease activity and damage measures, establishing its criterion validity. Patient education and aftercare correlated significantly (P< 0.01) with adherence to therapy. The PREMs questionnaire showed also a high degree of comprehensibility (9.4).
Conclusions The studied PREMs questionnaire was valid as well as reliable. The patients were able to comprehend varying response options on a categorical scale, and could accurately respond to items using a 7-day recall period. It provides informative measure for the patients’ experience with their disease, and in the meantime, facilitates incorporating the patients’ feedback into the patients’ management algorithm.
El Miedany et al. Clin Exp Rheumatol 2010; 28: 734-744.
Disclosure of Interest None Declared