The International Survey of People Living with Chronic Conditions (PaRIS survey): development of the conceptual framework and patient questionnaire

Problem

The Organization for Economic Cooperation and Development (OECD) PaRIS survey aims to support countries in improving care for people living with chronic conditions by collecting information on how these people experience the quality and performance of the primary and ambulatory care services they use in their country. We present the development of the conceptual framework and the patient questionnaire.

Approach

Starting from the OECD Health Care Quality Indicators framework (2015), we identified frameworks and conceptual models relevant to the needs of people receiving primary and ambulatory care for chronic conditions using bespoke structured searches in PubMed. A draft framework was refined though international 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 oversight by a Working Party of OECD member states representatives.

For the questionnaire, candidate scales and items were identified through a series of systematic literature reviews, engagement with international stakeholders including the PaRIS-PP, TAC and National Project Managers (NPMs) of participating countries, and oversight by a member states representatives. Four instruments for each domain were shortlisted using predefined criteria. A subsequent modified Delphi procedure was implemented for selecting a core instrument for each domain and additional relevant scales/items as informed by psychometric evaluation of the candidate instruments (EMPRO method). Further consultations took place with the relevant stakeholders to confirm the suitability of the proposed questionnaire.

Findings

78 frameworks were identified. Each iteration of feedback from PaRIS-PP and TAC and the international patient co-development workshops contributed to the final framework, which 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.

217 instruments were identified measuring one or more of the domains of the conceptual framework. The final version of the survey 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).

Consequences

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 current questionnaire will be evaluated through cognitive testing before being piloted in a Field Trial in participating countries. These subsequent stages will offer opportunities for improving the questionnaire, ensuring adequate performance and offering insights into how the questionnaire can be modified to reduce the burden of administration while balancing comprehensiveness and metric performance.