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

Kerry Woolfall1, Caitlin O'Hara1, Elizabeth Deja1

  • 1Health Services Research, University of Liverpool, Liverpool, UK.

Archives of Disease in Childhood
|June 9, 2019
PubMed

Insights

Parents prioritize their child's organ function, normal behavior, and treatment duration, alongside survival, when considering severe infections. These outcomes are influenced by their personal experiences during their child's illness.

Area of Science:

  • Pediatric critical care medicine
  • Qualitative research methodology
  • Patient-centered outcomes research

Background:

  • Severe infections in children pose significant treatment challenges.
  • Understanding parental priorities is crucial for effective pediatric healthcare and research.
  • Previous feasibility studies (Fluids in Shock and Fever) gathered parent perspectives.

Purpose of the Study:

  • To identify and synthesize prioritized outcomes from parents of children with suspected severe infections.
  • To inform the design of future clinical trials and core outcome set development.
  • To enhance patient-centered care in pediatric critical illness.

Main Methods:

  • Qualitative synthesis of parent interview data from two feasibility studies.
  • Inclusion of data from 85 parents with experience in UK emergency or intensive care units.
  • Analysis focused on identifying short-term and long-term outcomes prioritized by parents.

Main Results:

  • Parents prioritize survival, alongside short-term outcomes like organ function and normal appearance/behavior.
  • Treatment duration and need for mechanical support were also key short-term concerns.
  • Longer-term outcomes included the impact of illness on child health and development.
  • Parental priorities are shaped by their child's illness experience and the timing of outcome assessment.

Conclusions:

  • Parental priorities extend beyond survival to encompass functional recovery and developmental impact.
  • These findings are vital for designing relevant clinical trials for pediatric severe infections.
  • Incorporating parental perspectives strengthens the patient-centeredness of pediatric critical care research.
Abstract

Keywords:
clinical trialsoutcomes researchpaediatricsparentssevere infection

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