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

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

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)

1 Citation (Scopus)
78 Downloads (Pure)

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.

Original languageEnglish
Pages (from-to)1077-1082
Number of pages6
JournalArchives of Disease in Childhood
Volume104
Issue number11
Early online date7 Jun 2019
DOIs
Publication statusPublished - 18 Oct 2019

Keywords

  • clinical trials
  • outcomes research
  • paediatrics
  • parents
  • severe infection

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    Woolfall, K., O'Hara, C., Deja, E., Canter, R., Khan, I., Mouncey, P., Carter, A., Jones, N., Watkins, J., Lyttle, M. D., Tume, L., Agbeko, R., Tibby, S. M., Pappachan, J., Thorburn, K., Rowan, K. M., Peters, M. J., & 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