Outcome selection to evaluate interventions to support a successful transition from hospital to home of children with medical complexity (CMC) may be difficult due to the variety in available outcomes. To support researchers in outcome selection, this systematic review aimed to summarize and categorize outcomes currently reported in publications evaluating the effectiveness of hospital-to-home transitional care interventions for CMC. We searched the following databases: Medline, Embase, Cochrane library, CINAHL, PsychInfo, and Web of Science for studies published between 1 January 2010 and 15 March 2023. Two reviewers independently screened the articles and extracted the data with a focus on the outcomes. Our research group extensively discussed the outcome list to identify those with similar definitions, wording or meaning. Consensus meetings were organized to discuss disagreements, and to summarize and categorize the data. We identified 50 studies that reported in total 172 outcomes. Consensus was reached on 25 unique outcomes that were assigned to six outcome domains: mortality and survival, physical health, life impact (the impact on functioning, quality of life, delivery of care and personal circumstances), resource use, adverse events, and others. Most frequently studied outcomes reflected life impact and resource use. Apart from the heterogeneity in outcomes, we also found heterogeneity in designs, data sources, and measurement tools used to evaluate the outcomes.
Conclusion: This systematic review provides a categorized overview of outcomes that may be used to evaluate interventions to improve hospital-to-home transition for CMC. The results can be used in the development of a core outcome set transitional care for CMC.
Annemieke de Lange, Mattijs W. Alsem, Heleen N. Haspels, Clara D. M. van Karnebeek, Job B. M. van Woensel, Faridi S. Etten–Jamaludin & Jolanda M. Maaskant
Disease Category: Child health, Effective practice/health systems
Disease Name: Complex medical needs
Age Range: 18
Sex: Either
Nature of Intervention: Management of care
- Systematic review of outcomes measured in trials
- Systematic review
We searched Medline, EMBASE, Cochrane library, CINAHL, PsychInfo and Web of Science with help of a clinical librarian. The search was limited to articles published in English between 1 January 2010 and 15 March 2023. The search was executed on 15 November 2020, and
updated on 18 March 2023.