Keywords: Patient reported experiences of care; Patient reported outcomes; Patient centred care; Health system performance; Chronic conditions
The PaRIS survey aims to assist countries in improving care for people living with chronic conditions by measuring outcomes and how these people experience the quality and performance of the primary and ambulatory care services they use in their respective countries. We present the development of the conceptual framework and the patient questionnaire.
We identified frameworks using structured searches in PubMed. A draft framework was refined through virtual patient co-development workshops and iterative engagement with an international Patient Advisory Panel (PaRIS-PP) and supported by an international and multidisciplinary Technical Advisory Community (TAC) and overseen by a Working Party of OECD member states representatives. Candidate scales and items were identified through systematic literature reviews and engagement with stakeholders (PaRIS-PP, TAC and National Project Managers). Four instruments for each domain were shortlisted . A modified Delphi procedure was implemented for selecting a core instrument for each domain and additional relevant scales/items. Further consultations took place with stakeholders to confirm the suitability of the questionnaire.
The final framework identifies the following domains (number of subdomains): patient reported outcomes (4); patient reported experiences of care (9); health and health care capabilities; health behaviours (4); individual and sociodemographic factors; delivery system design; and health system design, policy and context. The final version of the questionnaire includes the following sections: “Your health” (18 items; PROMIS Global-10, WHO-5, and others), “Managing your health and health care” (26; Porter-Novelli and others), “Your experience of health care (P3CEQ and others)” (49), About yourself (24).
This conceptual framework has been developed through a systematic, replicable and inclusive process. A comprehensive questionnaire has been constructed based on the PaRIS survey framework for people living with chronic conditions and following an inclusive approach. The questionnaire was evaluated through cognitive testing before being piloted in a Field Trial in participating countries.