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

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 pa...

Full description

Saved in:

Bibliographic Details
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
Online Access:	Get full text
Tags:	Add Tag No Tags, Be the first to tag this record!

Description
Summary:	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.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 Communicated by Peter de Winter
ISSN:	1432-1076 0340-6199 1432-1076
DOI:	10.1007/s00431-023-05049-2