Transmural Care for Chronically Ill Children: Scientific Guidance and Evaluation of Pilot Projects
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Pilot project paediatric transmural care.
- Who it may be relevant to
- Registry conditions: Chronic Diseases in Children, Chronic Diseases in Adolescence, Health Personnel, Parents. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Belgium
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
The goal of this Realist Evaluation is to evaluate the implementation of pilot projects for transmural care in chronically ill children. The main question it aims to answer is: To what extent and how do the pilot projects for transmural care for chronically ill children provide an answer to the quintuple aim? Participants will * Complete questionnaires at three timepoints * Participate in focus group interviews
Detailed description
Introduction Chronic diseases have been increasing over the past few years, including in children. The chronic condition affects their daily functioning and quality of life and leads to frequent hospital admissions. To avoid unneccessary hospital admissions and to offer alternative and innovative forms of care, the Belgian Federal Public Service of Public Health, Food Chain Safety and Environment selected five pilot projects for transmural care for chronically ill children. This study was designed to evaluate these projects.
Methods and design The overall approach is a two-year longitudinal prospective Realist Evaluation using a mixed-methods design.
The quantitative strand, using routine data and questionnaires, will examine whether data from children, parents/legal guardians and healthcare professionals involved in a pilot project for paediatric transmural care comply with the quintuple aim outcomes.
The qualitative strand will be used (1) to evaluate the structure of the interventions, (2) for process evaluation and context analysis, and (3) to gather more in-depth information. This includes document analysis (including logbooks), focus groups with children, parents/legal guardians and healthcare professionals, and non-participatory observations.
Ethical Informed consent is required prior to inclusion in the evaluation study. Informed assent is requested from children older than 12 years. For this study, advice is asked from the Research Ethics Committee of Ghent University Hospital
Interventions
- Other Pilot project paediatric transmural care
The implementation of pilot projects for transmural care for chronically ill children
Primary outcome measures
- Quality of Life [Time frame: Baseline, 6 months and through study completion, up to 18 months maximum.]
- Parental Quality of Life [Time frame: Baseline, 6 months and through study completion, up to 18 months maximum.]
- Caregiver burden [Time frame: Baseline, 6 months and through study completion, up to 18 months maximum.]
- Diagnosis [Time frame: Through study completion, up to 18 months maximum.]
- Length of stay in the hospital [Time frame: Through study completion, up to 18 months maximum.]
- Length of stay in transmural care [Time frame: Through study completion, up to 18 months maximum.]
- Transmural care at school [Time frame: Through study completion, up to 18 months maximum.]
- Adverse events [Time frame: Continuous data collection, until study completion (18 months)]
- Patient experience [Time frame: Baseline, 6 months and through study completion, up to 18 months maximum.]
- Parental Empowerment [Time frame: Baseline, 6 months and through study completion, up to 18 months maximum.]
Eligibility criteria
Inclusion criteria
- Children: any child up to the age of 18 participating in a pilot project for paediatric transmural care.
- Parent/Legal guardian: any parent or legal guardian of a child participating in a pilot project for paediatric transmural care
- Healthcare professionals: any healthcare professional with patient contact involved within a pilot project for paediatric transmural care
- Coordinators: all study and care coordinators involved within a pilot project for paediatric transmural care
Exclusion criteria
- No signed informed consent form available
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Case-only
Study locations
Belgium · 11 centers
- Hôpital universitaire des enfants Reine Fabiola — Brussels
- Cliniques Universitaires Saint-Luc — Brussels
- Institut de Pathologie et de Génétique Charleroi — Charleroi
- University Hospital Antwerp — Edegem
- Universitair Ziekenhuis Gent — Ghent
- Universitair Ziekenhuis Brussel — Jette
- Centre Hospitalier Jolimont-Lobbes — La Louvière
- Universitaire Ziekenhuizen Leuven — Leuven
- … and 3 more centers
Publications
- Dequeker S, Vanderwee K, Van Daele S, Duprez V; PETRACA Study Group. Realist evaluation of Belgian pilot projects for paediatric transmural care: protocol for a mixed methods study. BMJ Open. 2025 Jun 25;15(6):e102152. doi: 10.1136/bmjopen-2025-102152. PMID 40562551
Identifiers
NCT: NCT06679595 · B670204000193