Nivel Panel Stronger Together: a longitudinal probability-based cohort capturing experiences and needs of people with chronic illnesses and disabilities concerning quality of life, healthcare and participation - a cohort profile.

内容摘要

The Nivel Panel Stronger Together (in Dutch: Nivel Panel Samen Sterk) is a probability-based panel, established to collect and analyse (longitudinal) data on the experiences and needs of individuals living with chronic illnesses and disabilities in the Netherlands, in specific regarding topics related to (1) quality of life, (2) healthcare and (3) participation in society. The panel consists of approximately 3500 individuals who have a medically diagnosed chronic disease and/or a mild-to-severe physical disability. About half of the panel members (49.6%) have both a chronic disease and physical disability; 36.2% have only a chronic disease and 10.4% only a physical disability. The most prevalent chronic diseases represented in the panel are cardiovascular diseases (23.2%), chronic respiratory diseases (22.7%) and diabetes mellitus (9.2%). Of those having a physical disability, most have a mild-to-moderate disability. Nivel Panel Stronger Together data are used for scientific publications, and to inform policy and practice on relevant challenges and changes regarding Dutch healthcare and participation in society. Among other things, it has been established how to support individuals with a long-term condition who experience challenges in self-management behaviours or health literacy, and what the needs of people with disabilities are in order to participate equally in society. We aim to establish new methods to include under-represented groups in the panel, such as young adults and those with a migration background. In addition, we are exploring options to complement self-reported panel-based survey data by linking it with routinely collected Dutch registration data.