Children with Medical Complexity (CMC) are defined as children who have medical fragility and intensive care needs that are not easily met by existing health care models. For many of these children the traditional medical focus of cure (in hospital) has shifted to care (at home). In practice the transition from the university hospital (where a team of professionals are involved in the care) and home setting (where parents are the most important caregivers) is a major challenge. At this moment, evidence-based interventions to underpin a successful and sustainable Hospital-to-Home (H2H) transition of CMC are lacking. To move forward in this field there is an urgent need for robust research to investigate the effectivity of H2H programs. However, research in this field is hampered by the heterogeneity of outcomes and measures used in the studies.
The aim of this study is to develop a Core Outcome Set to support research in the field of transitional care for children with medical complexity.
Contributors- Jolanda Maaskant, PhD, principal investigator and supervisor, Emma Children's Hospital Amsterdam
- Mattijs Alsem, PhD, Emma Children's Hospital Amsterdam
- Job van Woensel, PhD, Emma Children's Hospital Amsterdam
- Clara van Karnebeek, PhD, Emma Children's Hospital Amsterdam
- Jacqueline Kasten, Pediatric primary care organisation
- Sarike de Zoeten, Mother of a child with mecical complexiteit
- Marinke Barnhoorn, Teacher
Disease Category: Child health, Effective practice/health systems
Disease Name: Complex medical needs
Age Range: 0 - 18
Sex: Either
Nature of Intervention: Management of care
- Clinical experts
- Consumers (caregivers)
- Families
- Patient/ support group representatives
- Researchers
- COS for clinical trials or clinical research
- COS for practice
- Delphi process
- Systematic review
The development of COS will consist of two parts: (a) a systematic review of the literature, and (b) a Delphi study. The systematic review will reveal the outcomes used in previous research, and the Delphi study will bring consensus on the Core Outcome Set.