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Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness?
Michele P Dyson1, Kassi Shave1, Allison Gates1
1Alberta Research Centre for Health Evidence and the Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
Insights
Parents prioritize severe complications and treatment effectiveness for childhood acute respiratory infections (ARIs). Their priorities often differ from outcomes researched in systematic reviews, highlighting a need for better patient engagement in research.
Area of Science:
- Pediatric Medicine
- Health Services Research
- Patient-Reported Outcomes
Background:
- Acute respiratory infections (ARIs) are common in children.
- Understanding parental priorities is crucial for patient-centered care and research.
Purpose of the Study:
- To identify and rank the outcome priorities of parents whose children experienced an ARI.
- To compare these parental priorities with outcomes commonly reported in medical literature.
Main Methods:
- A two-phase mixed-methods study using a quantitative web-based survey followed by qualitative Facebook discussions.
- 110 parents completed the survey, and 4 participated in the discussion.
- Outcomes were ranked, and priorities were compared with findings from 35 Cochrane systematic reviews.
Main Results:
- Parents ranked major complications, illness symptoms, and length of illness as most important outcomes.
- Specific high-priority outcomes included severe complications, side effects, and doctor's assessment.
- Outcomes related to work, costs, and daily activity interference were ranked as minimally important.
- Parental priorities did not consistently align with outcomes frequently reported in Cochrane systematic reviews.
- Additional parental priorities included healthcare access, provider interaction, education, and child well-being.
Conclusions:
- Parental priorities for pediatric ARIs often diverge from outcomes emphasized in existing research.
- There is a need to develop effective strategies for engaging patients and parents in health research.
- Incorporating parental perspectives can lead to more relevant and impactful research outcomes.
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.
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