Hospital-to-home transitions for children with medical complexity: part 2—a core outcome set

• Published in: European journal of pediatrics Vol. 182; no. 9; pp. 3833 - 3843
• Main Authors: Haspels, Heleen N., de Lange, Annemieke A., Alsem, Mattijs W., Sandbergen, Bettina, Dulfer, Karolijn, de Hoog, Matthijs, Joosten, Koen F. M., van Karnebeek, Clara D., van Woensel, Job B. M., Maaskant, Jolanda M.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-09-2023; Springer Nature B.V
• Subjects: Child; Children; Complex patients; Delphi Technique; Disease management; Families & family life; Focus groups; Health care; Hospital to Home Transition; Hospitals; Humans; Medical personnel; Medicine; Medicine & Public Health; Outcome Assessment, Health Care - methods; Parents & parenting; Pediatrics; Quality of Life; Transitional Care; Treatment Outcome; Transitional care; Children with Medical Complexity; Delphi study; Focus groups; Core Outcome Set
• DOI: 10.1007/s00431-023-05049-2
• EISSN: 1432-1076
• ISSN: 1432-1076; 0340-6199

Appropriate outcome measures as part of high-quality intervention trials are critical to advancing hospital-to-home transitions for Children with Medical Complexity (CMC). Our aim was to conduct a Delphi study and focus groups to identify a Core Outcome Set (COS) that healthcare professionals and parents consider essential outcomes for future intervention research. The development process consisted of two phases: (1) a three-round Delphi study in which different professionals rated outcomes, previously described in a systematic review, for inclusion in the COS and (2) focus groups with parents of CMC to validate the results of the Delphi study. Forty-five professionals participated in the Delphi study. The response rates were 55%, 57%, and 58% in the three rounds, respectively. In addition to the 24 outcomes from the literature, the participants suggested 12 additional outcomes. The Delphi rounds resulted in the following core outcomes: (1) disease management, (2) child’s quality of life, and (3) impact on the life of families. Two focus groups with seven parents highlighted another core outcome: (4) self-efficacy of parents.

Conclusion
: An evidence-informed COS has been developed based on consensus among healthcare professionals and parents. These core outcomes could facilitate standard reporting in future CMC hospital to home transition research. This study facilitated the next step of COS development: selecting the appropriate measurement instruments for every outcome.
What is Known:
• Hospital-to-home transition for Children with Medical Complexity is a challenging process.
• The use of core outcome sets could improve the quality and consistency of research reporting, ultimately leading to better outcomes for children and families.
What is New:
• The Core Outcome Set for transitional care for Children with Medical Complexity includes four outcomes: disease management, children’s quality of life, impact on the life of families, and self-efficacy of parents.