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

Woolfall, K; O'Hara, C; Deja, E; Cantar, R; Khan, I; Mouncey, P; Carter, A; Jones, N; Watkins, J; Lyttle, M; Tume, LN; Agbecko, R; Tibby, S; Papachan, J; Thorburn, K; Rowan, K; Peters, M; Inwald, D

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

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: May 11, 2019
• Online Publication Date: Jun 7, 2019
• Publication Date: Oct 18, 2019
• Deposit Date: Sep 11, 2019
• Publicly Available Date: Sep 11, 2019
• Journal: Archives of Disease in Childhood
• Print ISSN: 0003-9888
• Electronic ISSN: 1468-2044
• Publisher: BMJ Publishing Group
• Volume: 104
• Issue: 11
• Pages: 1077-1082
• DOI: https://doi.org/10.1136/archdischild-2019-316807
• Publisher URL: http://dx.doi.org/10.1136/archdischild-2019-316807
• Related Public URLs: https://adc.bmj.com/
• Additional Information: Projects : FEVER Study