Follow-up of children who undergo an uncomplicated surgical procedure: A caregiver survey to determine satisfaction, family impact, and preferences for alternate follow-up.

BACKGROUND: Historically most surgical patients returned to clinic for an in-person postoperative follow-up. However, returning to hospital impacts the family in many ways. We hypothesized that in-person follow-up is not necessary after an uncomplicated procedure, and that caregivers would prefer an alternate follow-up. METHODS: We surveyed caregivers of children less than 17 years of age who underwent a simple appendectomy, pyloromyotomy, cholecystectomy, or repair of an inguinal or umbilical hernia. With REB approval and caregiver consent, surveys were completed in-person during clinic visits and by telephone for alternate follow-up plans. RESULTS: Despite interruptions due to COVID-19, 24 surveys were completed (clinic visit group N = 7, alternate plan group N = 17). Thirteen families resided in Winnipeg. The majority rated their overall satisfaction with follow-up as good-excellent (6/7 clinic group, 17/17 alternate group). The most frequent impacts to attend clinic were time off work (18/24), parking (17/24), gas costs (17/24), time from school (13/24) and childcare arrangements (12/24). The median estimated cost to attend clinic was 142 CAD$. Most families preferred an alternate plan (18/24) (i.e. call surgeon only if concerned, follow-up with their primary care provider or attend virtually). Only 4 children having an alternate follow-up plan required medical treatment for minor issues. DISCUSSION: We conclude there is significant impact on families to attend a post-operative in-person clinic visit. Although all respondents rated their satisfaction highly, the majority preferred the option of an alternate plan. Surgeons should consider offering families alternate follow-up after an uncomplicated procedure.

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

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 individuals completed the caregiver survey and 23.8% (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20% (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none. CONCLUSIONS: With caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders.

Analysis of a parent-initiated social media campaign for Hirschsprung's disease.

BACKGROUND: Social media can be particularly useful for patients or families affected by rare conditions by allowing individuals to form online communities across the world. OBJECTIVE: Our aim in this study was to conduct a descriptive and quantitative analysis of the use of a social media community for Hirschsprung's Disease (HD). METHODS: In July 2011, a mother of a child with HD launched the "Shit Happens" campaign. The campaign uses social media (blogs, Twitter, and Facebook) to engage other families affected by HD. Internet analytics including Google Analytics and Facebook Insights were used to evaluate the reach and responsiveness of this campaign. RESULTS: On the day the HD campaign was launched, 387 people viewed the blog "Roo's Journey". Blog views have now exceeded 5400 views from 37 countries. The Facebook page extends to 46 countries, has an average post reach of 298 users, 1414 "likes", and an overall reach of 131,032 users. The campaign has 135 Twitter followers and 344 tweets at the time of writing. The most common question posted on the Facebook page is related to treatment for extreme diaper rash. Responsiveness assessment demonstrated that within 2 hours of posting, a question could receive 143 views and 20 responses, increasing to 30 responses after 5 hours. CONCLUSIONS: Social media networks are well suited to discussion, support, and advocacy for health-related conditions and can be especially important in connecting families affected by rare conditions. The HD campaign demonstrates the reach and responsiveness of a community that primarily relies on social media to connect families affected by HD. Although responsive, this community is currently lacking consistent access to evidence-based guidance for their common concerns. We will explore innovative consumer-researcher partnerships to offer a solution in future research.