Outcomes in Child Health: comparing outcomes evaluated in Cochrane Reviews and patient-important outcomes identified by parents using social media

Tags: Oral
Hamm M1, Fernandes R2, Scott SD1, Hartling L1
1University of Alberta, Canada, 2Cochrane Child Health Field; Cochrane Portugal; Department of Pediatrics and Clinical Pharmacology Unit, Lisbon Academic Medical Centre, Portugal

Background: Selection of appropriate outcomes for clinical research is increasingly focused on patient-centeredness, but outcomes reported in the literature do not necessarily align with outcomes important to patients.

Objectives: To compare outcomes reported in Cochrane Reviews on pediatric acute respiratory infections (ARI) with those identified by parents as important to them and their children.

Methods: Parents of children who had an ARI were recruited via social media to provide input on the outcomes that are most important to them when their child is sick. We used the registry of child-relevant Cochrane Reviews maintained by the Cochrane Child Health Field to identify reviews applicable to ARI and extracted data on their reported outcomes and the frequency with which they appeared across reviews. This set of outcomes was compiled into an online survey in which parents were asked to rate each on a scale of 1–100 based on how important they considered it to be. We also asked parents to identify other important outcomes that were not included in the list. We analyzed data descriptively using a predefined outcome domain framework and compared the prominence of outcomes evaluated in Cochrane Reviews with those identified as being important by parents.

Results: We identified 35 reviews relevant to pediatric ARI. In the reviews and the survey, safety was commonly endorsed, with adverse events reported 26 times across reviews, and parents ranking major side effects (mean score 86.7/100) among their most important concerns. Parents identified severe complications as their most important concern (94.5/100). Resource utilization was more prominent in reviews, with admission rates and length of stay/time to discharge ranking in the highest quartile of outcomes measured, while parents scored similar items in the 75th percentile. Social and family outcomes (e.g. quality of life) were not often reported in reviews, but made up the most frequently mentioned outcomes when parents were asked about other concerns that were not listed.

Conclusions: Safety is a primary concern to parents. Integrating patient priorities will ensure the relevance of research results.