Measuring what matters to patients

Luxembourg joins international effort to evaluate primary healthcare standards

• Department of Precision Health
• Patient-Reported Indicator Survey
• Public Health Expertise

PaRIS, an international survey set to launch in 23 countries, has just arrived in Luxembourg. Thanks to the efforts of the Public Health Expertise group at the Luxembourg Institute of Health, PaRIS will soon begin recruitment of patients. This pioneering study, by invitation only, will help define and improve the care of patients with chronic diseases both locally and worldwide.

Chronic diseases are generally defined as conditions that last one year or more, during which they necessitate ongoing medical attention, limit daily activities or both. Accordingly, chronic illnesses include a wide variety of conditions, dementia, asthma, arthritis, diabetes and cancer being only few examples. Despite the substantial level of healthcare required to manage and treat these conditions, rarely has it been measured how patients experience their care and its outcomes in a systematic way. Indeed, while most countries spend almost 10% of their GDP on health, there is a lack of data evaluating whether the health systems are truly delivering what people need. To fill this critical information gap, Luxembourg Institute of Health researchers, Dr Mohammed Iddir and Ms Aline Lecomte, from the Public Health Expertise division (led by Dr Sophie Couffignal) of the Department of Precision Health, were assigned by the Directorate of Health to lead the PaRIS survey in Luxembourg.

PaRIS (Patient-Reported Indicator Surveys) is a new study that will take place in 23 countries world-wide, led by an international consortium on behalf of the Organisation for Economic Co-operation and Development (OECD). Using an anonymised questionnaire, a random sample of Luxembourg patients will have the opportunity to reveal how health systems are contributing to their lives. The study will use a people-centred systematic collection of data on outcomes and experiences to assess which matter the most to patients. This information will allow health services, both nationally and internationally, to learn and improve, and to deliver the ultimate objective of health care: maximising people’s health and well-being. “The PaRIS International Survey of People Living with Chronic Conditions is the first international survey of patient-reported health outcomes and experiences for adults living with one or more chronic conditions who are managed in primary health care centers,” explains Dr Iddir. The survey will focus on (1) Patient-Reported Experience Measures (PREMs), which measure how patients experience health care and refers to practical aspects of care, such as accessibility, care co-ordination and provider-patient communication, and on (2) Patient-Reported Outcome Measures (PROMs), which provide information on how patients assess the results of the care they receive. PROMs contain information about outcomes such as quality of life, physical functioning and psychological well-being.

This study will show how key results and experiences vary between and within countries. This will allow countries to compare themselves, learn from each other’s approaches and thus improve. It will promote a dialogue with policy makers, health care providers and patients on how to improve performance and make primary care services more patient-centred,

adds Ms Lecomte.

About PaRIS in Luxembourg

A pilot phase of the PaRIS study has started across the nation in May 2022. Participation in the survey will be by invitation only, and has begun with the selection of general practitioners (GPs) on the basis of simple random sampling from the Ministry of Health’s Register of Health Professionals. GPs selected were asked to complete an online questionnaire and assist the LIH in selecting patients from the practice’s medical records. Eligible patients are being chosen by simple random sampling from the practice medical records of each participating GP. To participate in the study, patients will be asked to complete an online or paper questionnaire.

Recruitment of patients will be according to specific inclusion criteria. For instance, patients must be at least 45 years old, reside in Luxembourg, live in a private household and have had at least one contact with a GP for any medical or administrative reason during the 6 months preceding the selection procedure.