The PROactive cohort study: rationale, design, and study procedures
der Vlist, Merel M.Nap van; Hoefnagels, Johanna W.; Dalmeijer, Geertje W.; Moopen, Neha; van der Ent, Cornelis K.; Swart, Joost F.; van de Putte, Elise M.; Nijhof, Sanne L.
(2022) European Journal of Epidemiology, volume 37, issue 9, pp. 993 - 1002
(Article)
Abstract
Children with a chronic condition face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. The PROactive cohort study identifies children with a chronic disease at high risk of debilitating fatigue, decreased daily life participation and psychosocial problems, as well as children who are
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resilient and thrive despite the challenges of growing up with a chronic condition. Both groups will teach us how we can best support children, adolescents and parents to adapt to and manage a disease, as well as tailor interventions to their specific needs. This cohort follows a continuous longitudinal design. It is based at the Wilhelmina Children’s Hospital (WKZ) in the Netherlands and has been running since December 2016. Children with a chronic condition (e.g. cystic fibrosis, juvenile idiopathic arthritis, chronic kidney disease, or congenital heart disease) as well children with medically unexplained fatigue or pain in a broad age range (2–18 years) are included, as well as their parent(s). Data are collected from parents (of children between 2 and 18 years) and children (8–18 years), as well as data from their electronic health record (EHR). Primary outcome measures are fatigue, daily life participation, and psychosocial well-being, all assessed via patient- and proxy-reported outcome measures. Generic biological/lifestyle, psychological, and social factors were assessed using clinical assessment tools and questionnaires. In the PROactive cohort study the research assessment is an integrated part of clinical care. Children are included when they visit the outpatient clinic and are followed up annually.
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Keywords: Biopsychosocial model, Child health, Chronic condition, Cohort study, Lifecycle paediatrics, PROactive, Epidemiology, Journal Article
ISSN: 0393-2990
Publisher: Springer Netherlands
Note: Funding Information: This design paper is part of the PROactive cohort study. All data is originating from children under treatment at the Wilhelmina Children’s Hospital Utrecht (WKZ). We are grateful to everyone who participated in this research or worked on this project to make it possible. We would like to thank Strategic Theme Dynamics of Youth (Utrecht University) in their support to set up the PROactive cohort study according to FAIR principles and open science. The PROactive cohort study working group consists of the authors of this paper, and Dr. A. van Royen-Kerkhof (paediatric systematic autoimmune diseases), Prof. Dr. J. Frenkel (paediatric auto inflammatory conditions), Dr. J.M van Montfrans (primary immunodeficiency’s), Dr. V.M. Wolters (paediatric inflammatory bowel disease), A.W. Hindriks-Keegstra (paediatric pain group), Dr. J.M.P.J. Breur (paediatric congenital heart disease), Dr. M. Lilien (paediatric chronic kidney disease) and Prof dr. M. Benders (neonatology). In particular we would like to thank Prof. Dr. M.A. Grootenhuis for her involvement in the realization of this cohort, collaboration with the inclusion of oncology patients (from 2017 to 2020) and her suggestions for improving this design paper. Funding Information: This cohort is funded by the Wilhelmina Children’s Hospital Utrecht research grant (WKZ Onderzoeksfonds R3939 ‘Towards a healthy future and improved societal participation’), Elisabeth von Freyburg Stichting and Invigoration Grant from the strategic theme Dynamics of Youth of the University of Utrecht. Publisher Copyright: © 2022, The Author(s).
(Peer reviewed)