Core Outcome Measures in Effectiveness Trials

Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study

General Information

Abstract:
BACKGROUND: Encephalitis, characterised as inflammation of the brain tissue, is an important cause of acquired brain injury in children. Objective clinical outcomes vary significantly between affected patients, however they do not always correlate with quality of life as reported by parents. The aim of this study was to explore how parents experience and interpret outcomes in relation to their child who has been affected by encephalitis. METHODS: Data were derived from in-depth, semi-structured interviews, with 15 parents of 12 children and young people affected by encephalitis. Paediatric cases were identified from the retrospective arm of the research programme 'ENCEPH-UK-Understanding and Improving the Outcome of Encephalitis', and from the prospective UK childhood meningitis and encephalitis cohort study (UK-ChiMES, 2012 to 2016). Data were analysed thematically. RESULTS: Parents' perspectives on important outcomes for their child and family changed during the different stages of the encephalitis illness trajectory: from acute illness, recovery and rehabilitation, then reintegration into everyday life. Parents' understanding of their children's overall outcome was informed by their own experiences, involving comparisons with other children and reflections on their child's problems before, during and after the acute illness. CONCLUSION: Outcomes in paediatric encephalitis need to be understood in terms of the context of the patient and family experience as well as the timeframe of recovery. The research highlights the need to include more patient, parent and/or carer reported outcome measures during patient assessment, and that assessment should be repeated during recovery as family concerns change. In the longer term, these parameters could be included in clinical and rehabilitation practice to further support child recovery.

Authors:
Lemon, J. Cooper, J. Defres, S. Easton, A. Sadarangani, M. Griffiths, M. J. Pollard, A. J. Solomon, T. Kneen, R.

Publication

Journal:
PLoS One
Volume:
14
Issue:
9
Pages:
e0220042 -
Year:
2019
DOI:
Further Study Information

Date:
Funding source(s):
NIHR Programme Grants for Applied Research ‘Understanding and improving outcomes in encephalitis’ (grant number PRPG-108-10048) www.nihr.ac.uk, funding from the Meningitis Research Foundation (MRF- grant number 1103.0) www.meningitis.org and Pfizer (grant number WS2301162) www.pfizer.co.uk.

Health Area

Disease Category
Infectious disease
Neurology

Disease Name
Encephalitis (acute)

Target Population

Age Range
0 - 16

Sex
Either


Nature / type of Intervention
Any

Method(s)

Interview

Data were derived from in-depth, semi-structured interviews, with 15 parents of 12 children and young people affected by encephalitis. Paediatric cases were identified from the retrospective arm of the research programme ‘ENCEPH-UK-Understanding and Improving the Outcome of Encephalitis’, and from the prospective UK childhood meningitis and encephalitis cohort study (UK-ChiMES, 2012 to 2016). Data were analysed thematically.


Stakeholders Involved

Consumers (caregivers)
Consumers (patients)

Study Type

Patient perspectives

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