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

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.

• Journal Article Type: Article
• Acceptance Date: Mar 1, 2019
• Online Publication Date: Jun 7, 2019
• Publication Date: Oct 18, 2019
• Deposit Date: May 7, 2019
• Publicly Available Date: Jun 12, 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• Peer Reviewed: Not Peer Reviewed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
• Contract Date: May 24, 2019