Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review.

ABSTRACT:

Background

Patient and public involvement in health research is important to produce relevant and impactful results.

Objective

This paper aimed to prioritize and summarize Hirschsprung disease (HD)-related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign.

Methods

We conducted a Web-based survey with the 2 stakeholder groups to identify information needs. The caregiver survey was conducted through a global Web-based community, and the surgeon survey was distributed to members of the Canadian Association of Paediatric Surgeons (CAPS). We conducted a literature review to identify evidence on the prioritized topics.

Results

Our findings showed that 54.9% (89/162) of the i

SUBMITTER: Wittmeier KD 

PROVIDER: S-EPMC6320415 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature