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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.

European Journal of Epidemiology
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Summary

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.

Keywords:
Biopsychosocial modelChild healthChronic conditionCohort studyLifecycle paediatricsPROactive

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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.