Article type
Year
Abstract
Background: Cochrane Reviews investigate the effects of interventions for prevention, treatment, and rehabilitation. However, these topics are typically chosen by researchers, clinicians, policy makers or funders with little input from consumers (patients, parents and caregivers). Consumer involvement can change healthcare priorities and encourages the study of outcomes that are important to them.
Objectives: To engage parents in developing a priority list of research topics related to child health, and to assess the availability of corresponding Cochrane evidence.
Methods: We invited members of our Pediatric Parent Advisory Group (P-PAG) to participate (n = 14). We sent a list of 46 child health topics to parents who ranked the degree to which they agreed each topic was a priority. Ratings were based on a 5-point Likert scale (1 = strongly disagree, to 5 = strongly agree). Topics rated 4 or 5 by ≥ 70% of respondents were discussed and re-ranked during the focus group. All topics that were rated higher than 4 by ≥ 70% of parents made the final priority list. We then searched the Cochrane Library to identify systematic reviews relating to their priority topics that focused on any themes identified during discussion.
Results: Thirteen topics were highly rated and discussed at the focus group. Eight topics were then identified as high priority and were related to: patient safety and quality of care; trauma and injuries; obesity and weight management; vaccines; alcohol and other drug use; pain; childhood cancers; and abuse. Two common themes were identified from narrative focus group data: 'family dynamics' and 'communication'. Currently, no Cochrane Reviews focussing on either of these themes for the identified priority topics are available.
Conclusion: A disconnect exists between parent priority topics and the available Cochrane evidence. Moreover, themes identified suggest perspectives that should be considered in the design, implementation and interpretation of patient-oriented research.
Patient or healthcare consumer involvement: We engaged the P-PAG in all steps of the development (e.g. list and survey design) and dissemination of this research project. We have also evaluated 'patient engagement' through a validated survey, the results of which will guide our relationship and efforts to engage with the P-PAG in future research initiatives
Objectives: To engage parents in developing a priority list of research topics related to child health, and to assess the availability of corresponding Cochrane evidence.
Methods: We invited members of our Pediatric Parent Advisory Group (P-PAG) to participate (n = 14). We sent a list of 46 child health topics to parents who ranked the degree to which they agreed each topic was a priority. Ratings were based on a 5-point Likert scale (1 = strongly disagree, to 5 = strongly agree). Topics rated 4 or 5 by ≥ 70% of respondents were discussed and re-ranked during the focus group. All topics that were rated higher than 4 by ≥ 70% of parents made the final priority list. We then searched the Cochrane Library to identify systematic reviews relating to their priority topics that focused on any themes identified during discussion.
Results: Thirteen topics were highly rated and discussed at the focus group. Eight topics were then identified as high priority and were related to: patient safety and quality of care; trauma and injuries; obesity and weight management; vaccines; alcohol and other drug use; pain; childhood cancers; and abuse. Two common themes were identified from narrative focus group data: 'family dynamics' and 'communication'. Currently, no Cochrane Reviews focussing on either of these themes for the identified priority topics are available.
Conclusion: A disconnect exists between parent priority topics and the available Cochrane evidence. Moreover, themes identified suggest perspectives that should be considered in the design, implementation and interpretation of patient-oriented research.
Patient or healthcare consumer involvement: We engaged the P-PAG in all steps of the development (e.g. list and survey design) and dissemination of this research project. We have also evaluated 'patient engagement' through a validated survey, the results of which will guide our relationship and efforts to engage with the P-PAG in future research initiatives