Patient-Reported Indicator Surveys (PaRIS): measuring patient reported experiences and outcomes across populations and health systems

Abstract We aimed to develop and test the performance of a questionnaire for adults (aged 45 or older) with one or more chronic conditions who use primary/ambulatory care across populations and health systems in multiple countries. Candidate scales and items were identified through a systematic process supported by international stakeholders (PaRIS Patient Advisory Panel, Technical Advisory Community and Working Party members of participating countries). Four instruments for each domain, covering patient reported outcome measures (PROMs), patient reported experience measures (PREMs), health behaviours, and health and health care capabilities, were shortlisted using predefined criteria and evaluated using the EMPRO method. A modified Delphi supported selecting a core instrument for each domain and additional relevant scales/items. Consultations took place with the stakeholders to confirm the suitability of the proposed questionnaire. The questionnaire was evaluated through cognitive testing and further modified accordingly. The survey was piloted in a Field Trial. Psychometric evaluation was conducted with data from a Field trial on an item level and scale level. Out of 217 instruments, the Delphi resulted in consensus on a core instrument for each main domain and additional questions to ensure comprehensiveness. The cognitive testing of the draft survey (17 languages, 20 countries) confirmed that most questions were interpreted as intended. The version of the survey developed for the field trial included 118 questions. The field trial psychometric evaluation was based on 10,145 patients, across 18 countries. The questionnaire performed well at item level and at scale level. Performance in terms of structure and validity was good overall. A revised version of the patient questionnaire was created with 115 items. A comprehensive questionnaire has been constructed based on the PaRIS survey framework for people living with chronic conditions and following an inclusive approach.