The focus of the PROactive study is to understand fatigue, pain and societal participation in children with chronic/life-threatening diseases. Therefore, we set up three studies:
(1) PROactive KLIK: A prospective cohort study among children with (auto)immune diseases, cystic fibrosis, after treatment for childhood cancer and children with unexplained fatigue and/or pain. We study the associations between fatigue, pain and societal participation on one hand and disease activity, biological and psychosocial factors on the other hand. Psychosocial measurements are collected via questionnaires filled out at www.hetklikt.nu.
(2) Semi-structured interviews: A qualitative study through in-depth interviews with patients and their parents. In this study, we are studying which themes are important regarding societal participation, seen from the patients’ and parents’ perspective, with a focus on fatigue and pain.
(3) PROfeel: An eHealth study using a smartphone application to gain insight in fatigue and/or pain on an individual level. Teenagers measure their own complaints during six weeks, which leads to a personalized report.
Merel's project is carried out in collaboration with the Wilhelmina Children's Hospital.
he is supervised by Dr. S.L. Nijhof (WKZ), Prof. Dr. E.M. van de Putte (WKZ), Prof. Dr. C.K. van der Ent (WKZ), Prof. Dr. M.A. Grootenhuis, Prof. dr. M.M. van den Heuvel-Eibrink and Dr. G.A. Dalmeijer (Julius Centre)
- Prevalence of severe fatigue among adults with cystic fibrosis: A single center study - https://www.ncbi.nlm.nih.gov/pubmed/29606526
- Fatigue in childhood chronic disease - https://www.ncbi.nlm.nih.gov/pubmed/31175124
- Daily life participation in childhood chronic disease: a qualitative study - https://www.ncbi.nlm.nih.gov/pubmed/31748222