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Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: A qualitative synthesis

Woolfall, Kerry; O'Hara, Caitlin; Deja, Elizabeth; Canter, Ruth; Khan, Imran; Mouncey, Paul; Carter, Anjali; Jones, Nicola; Watkins, Jason; Lyttle, Mark David; Tume, Lyvonne N; Agbecko, Rachel; Tibby, Shane M.; Pappachan, John; Thorburn, Kent; Rowan, Kathryn M.; Peters, Mark John; Inwald, David

Authors

Kerry Woolfall

Caitlin O'Hara

Elizabeth Deja

Ruth Canter

Imran Khan

Paul Mouncey

Anjali Carter

Nicola Jones

Jason Watkins

Lyvonne Tume Lyvonne.Tume@uwe.ac.uk
Associate Professor in Child Health

Rachel Agbecko

Shane M. Tibby

John Pappachan

Kent Thorburn

Kathryn M. Rowan

Mark John Peters

David Inwald



Abstract

Objective: To identify parents' prioritised outcomes by combining qualitative findings from two trial feasibility studies of interventions for paediatric suspected severe infection. Design: Qualitative synthesis combining parent interview data from the Fluids in Shock (FiSh) and Fever feasibility studies. Parents had experience of their child being admitted to a UK emergency department or intensive care unit with a suspected infection. Participants: n=: 85 parents. FiSh study: n=41 parents, 37 mothers, 4 fathers, 7 were bereaved. Fever study: n=44 parents, 33 mothers, 11 fathers, 7 were bereaved. Results: In addition to survival, parents prioritised short-term outcomes including: organ and physiological functioning (eg, heart rate, breathing rate and temperature); their child looking and/or behaving more like their normal self; and length of time on treatments or mechanical support. Longer term prioritised outcomes included effects of illness on child health and development. We found that parents' prioritisation of outcomes was influenced by their experience of their child's illness, survival and the point at which they are asked about outcomes of importance in the course of their child's illness. Conclusions: Findings provide insight into parent prioritised outcomes to inform the design of future trials investigating treatments for paediatric suspected or proven severe infection as well as core outcome set development work.

Citation

Woolfall, K., O'Hara, C., Deja, E., Canter, R., Khan, I., Mouncey, P., …Inwald, D. (2019). Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: A qualitative synthesis. Archives of Disease in Childhood, 104(11), 1077-1082. https://doi.org/10.1136/archdischild-2019-316807

Journal Article Type Article
Acceptance Date Mar 1, 2019
Online Publication Date Jun 7, 2019
Publication Date Oct 18, 2019
Journal Archives of Disease in Childhood
Print ISSN 0003-9888
Electronic ISSN 1468-2044
Publisher BMJ Publishing Group
Peer Reviewed Not Peer Reviewed
Volume 104
Issue 11
Pages 1077-1082
DOI https://doi.org/10.1136/archdischild-2019-316807
Keywords qualitative, paediatrics, Outcomes research, severe infection, clinical trials, Parents
Public URL https://uwe-repository.worktribe.com/output/851307
Publisher URL http://dx.doi.org/10.1136/archdischild-2019-316807

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