Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: a qualitative synthesis
Kerry Woolfall1, Caitlin O’Hara1, Elizabeth Deja1, Ruth Canter2, Imran Khan3, Paul Mouncey2, Anjali Carter4, Nicola Jones4, Jason Watkins4, Mark David Lyttle5,6, Lyvonne Tume5, Rachel Agbeko7, Shane M Tibby8, John Pappachan9, Kent Thorburn10, Kathryn M Rowan2, Mark John Peters11, David Inwald12 on behalf of PERUKI (Paediatric Emergency Research in the UK and Ireland) and PICS (Paediatric Intensive Care Society)
Author affiliations
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.
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
http://dx.doi.org/10.1136/archdischild-2019-316807
Kerry Woolfall1, Caitlin O’Hara1, Elizabeth Deja1, Ruth Canter2, Imran Khan3, Paul Mouncey2, Anjali Carter4, Nicola Jones4, Jason Watkins4, Mark David Lyttle5,6, Lyvonne Tume5, Rachel Agbeko7, Shane M Tibby8, John Pappachan9, Kent Thorburn10, Kathryn M Rowan2, Mark John Peters11, David Inwald12 on behalf of PERUKI (Paediatric Emergency Research in the UK and Ireland) and PICS (Paediatric Intensive Care Society)
Author affiliations
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.
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
http://dx.doi.org/10.1136/archdischild-2019-316807
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