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

Abstract

ObjectivesTo identify the outcome priorities of parents of children who had experienced an acute respiratory infection (ARI).DesignThis 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.SettingSurvey and discussion data were collected via the internet.Participants110 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 measuresThe 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).ResultsCommonly 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.ConclusionsIn 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.

How Often Are Patient-Important Outcomes Represented in Neonatal Randomized Controlled Trials? An Analysis of Cochrane Neonatal Reviews

“…Following the main objective, we categorized the outcomes into “PIOs” and “non-PIOs.” We defined PIOs as outcomes that patients value directly [16, 21, 25, 26]. This included major clinical events (mortality and morbidities) as well as patients’ or carers’/caregivers’ perception.…”

Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review

“…Facebook-specific methods to engage stakeholders included embedding survey links within Facebook posts, using the platform’s boosting feature (ie, paid advertisements), and hiring a Facebook advertising specialist. Informational Facebook pages were also used and involved private and public question-and-answer pages and a resource center with links to relevant documents [ 5 , 17 , 14 - 18 ].…”

Defining Symptom Concepts in Chronic Subjective Tinnitus: Web-Based Discussion Forum Study

“…Although the uptake of Web discussion forums as a platform for COS development is somewhat in its infancy, they have been successfully applied to evaluate the face validity of a new patient-reported outcome measure of treatment response in vitiligo [21], to explore patient perceptions of proposed core outcome domains for eczema [22,23], and to investigate patient priorities for a COS for pediatric acute respiratory illness [24]. Web-based platforms are now growing in popularity within the tinnitus research community, and self-help discussion forums are starting to be used for recruitment [25] and research data collection [26].…”