Core Outcome Measures in Effectiveness Trials

Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study

General Information

Abstract:
OBJECTIVES: To identify the outcome priorities of parents of children who had experienced an acute respiratory infection (ARI). DESIGN: This was a two-phase, mixed methods study with a sequential exploratory design. We used a cross-sectional quantitative web-based survey to elicit parents' priorities for paediatric ARI. We then used a discussion moderated via Facebook to elucidate richer descriptions of parents' priorities. SETTING: Survey and discussion data were collected via the internet. PARTICIPANTS: 110 parents (90% women, median age 35 years, 92.7% urban dwelling, 94.5% with a postsecondary education) with a child who had experienced an ARI responded to the survey. Four parents participated in the Facebook discussion. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was parents' rankings of outcomes related to paediatric ARI. The secondary outcomes were the alignment of parent-reported important outcomes with those commonly reported in Cochrane systematic reviews (SRs). RESULTS: Commonly reported ARIs included croup (44.5%), wheezing (43.6%) and influenza (38.2%). Parents ranked major complications, illness symptoms and length of stay as the most important outcome categories. With respect to specific outcomes, severe complications, major side effects, doctor's assessment, relapse, oxygen supplementation and results from laboratory measures were reported as most important (75th-99th percentile). Taking time off work, mild complications, interference with daily activities, treatment costs, absenteeism, follow-up visits and other costs were deemed minimally important (<25th percentile). In 35 Cochrane SRs, 29 unique outcomes were reported. Although participants' priorities sometimes aligned with outcomes frequently reported in the literature, this was not always true. Additional priorities from the survey (n=50) and Facebook discussions (n=4) included healthcare access, interacting with healthcare providers, education, impact on daily activities and child well-being. CONCLUSIONS: In the context of paediatric ARI, parents' priorities did not always align with commonly researched outcomes. Appealing and efficient strategies to engage patients and parents in research should be developed.

Authors:
Dyson, M. P. Shave, K. Gates, A. Fernandes, R. M. Scott, S. D. Hartling, L.

Publication

Journal:
BMJ Open
Volume:
7
Issue:
12
Pages:
e018199 -
Year:
2017
DOI:
Further Study Information

Date:
December 2013 - March 2014
Funding source(s):
This work was supported by KT Canada, grant number CIHR 87776 (SG-1) and Alberta Innovates Health Solutions, grant number 201400561. LH is supported in part by a Canadian Institutes of Health Research New Investigator Award. SDS is a Canada Research Chair (Tier II) for Knowledge Translation in Child Health and is also supported by an Alberta Innovates Health Solutions Population Health Investigator Award.

Health Area

Disease Category
Lungs & airways

Disease Name
Acute respiratory illness

Target Population

Age Range
0 - 17

Sex
Either


Nature / type of Intervention
Not specified

Method(s)

Survey

This mixed methods study used an explanatory sequential design,
and involved two phases: (1) a quantitative survey to determine parent priorities for ARI outcomes; (2) a qualitative follow-up in which we sought elaboration on parents’ priorities.

A cross-sectional quantitative web-based survey to elicit parents’ priorities
for paediatric ARI. We then used a discussion moderated via Facebook to elucidate richer descriptions of parents’ priorities.


Stakeholders Involved

Consumers (caregivers)

Study Type

Patient perspectives
Prioritising

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