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The PROactive cohort study: rationale, design, and study procedures
Merel M Nap-van der Vlist1, Johanna W Hoefnagels2,3, Geertje W Dalmeijer4
1Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands.
Insights
The PROactive cohort study identifies resilient children and those at risk for fatigue and psychosocial issues due to chronic conditions. This research aims to improve support and interventions for children with chronic diseases and their families.
Area of Science:
- Pediatric Health
- Chronic Disease Management
- Developmental Psychology
Background:
- Children with chronic conditions experience significant physical, social-emotional, and cognitive development challenges.
- Identifying both vulnerable and resilient children is crucial for effective support strategies.
- Growing up with a chronic illness necessitates tailored interventions for adaptation and management.
Purpose of the Study:
- To identify children with chronic diseases at high risk for fatigue, reduced daily participation, and psychosocial problems.
- To identify children who demonstrate resilience and thrive despite chronic health challenges.
- To inform the development of targeted support and interventions for children, adolescents, and parents managing chronic conditions.
Main Methods:
- Continuous longitudinal cohort design initiated in December 2016 at Wilhelmina Children's Hospital, Netherlands.
- Inclusion of children aged 2-18 years with chronic conditions (e.g., cystic fibrosis, juvenile idiopathic arthritis) or unexplained fatigue/pain, and their parents.
- Data collection via parent and child questionnaires, electronic health records (EHR), and clinical assessments, with annual follow-ups.
Main Results:
- The PROactive study distinguishes between children with chronic conditions who are at high risk for adverse outcomes and those who are resilient.
- Key outcome measures include fatigue, daily life participation, and psychosocial well-being, assessed through patient and proxy reports.
- Assessment of generic biological/lifestyle, psychological, and social factors provides a comprehensive view of the child's experience.
Conclusions:
- Understanding the spectrum of adaptation in children with chronic conditions is vital.
- The PROactive cohort provides valuable insights for optimizing care and support systems.
- Integrated research within clinical care facilitates timely and relevant interventions for pediatric chronic conditions.
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 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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