ReviewJournal of medical Internet research2018
Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review.
Review in Journal of medical Internet research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it, 21 citations in OpenAlex.
- Updated European Reference Network for rare Inherited and Congenital Digestive and Gastrointestinal Anomalies guidelines for the management of rectosigmoid Hirschsprung's disease 2025.Journal of pediatric gastroenterology and nutrition · 2026Guideline
- Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- Preoperative nutritional support in children with Hirschsprung disease: a prospective multicenter open-label randomized controlled trial.Nature communications · 2025Trial
- Growth and dietary effects on gastrointestinal symptoms in children with Hirschsprung's disease.Pediatric surgery international · 2026Observational
- Multidisciplinary management of postoperative continence issues in rectosigmoid Hirschsprung disease: a unicentric experience on 86 patients.Pediatric surgery international · 2026Article
- Influence of Diet on Bowel Function and Abdominal Symptoms in Children and Adolescents with Hirschsprung Disease-A Multinational Patient-Reported Outcome Survey.Children (Basel, Switzerland) · 2024Article
- The Role of Patient Organisations-Patients' and Parents' Views and Experience of Hirschsprung's Disease.Children (Basel, Switzerland) · 2024Article
- Bowel Management in Hirschsprung Disease-Pre-, Peri- and Postoperative Care for Primary Pull-Through.Children (Basel, Switzerland) · 2024Article
- Children with Hirschsprung's Disease Report Dietary Effects on Gastrointestinal Complaints More Frequently than Controls.Children (Basel, Switzerland) · 2023Article
- Screening of undernutrition in children with Hirschsprung disease using preoperative anthropometric parameters: A multicenter cross-sectional study.JPEN. Journal of parenteral and enteral nutrition · 2023Article
- Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation.Implementation science communications · 2022Article
- Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.Journal of medical Internet research · 2021Review
- Considerations for Health Researchers Using Social Media for Knowledge Translation: Multiple Case Study.Journal of medical Internet research · 2020Article
- ERNICA guidelines for the management of rectosigmoid Hirschsprung's disease.Orphanet journal of rare diseases · 2020Review
- Consensus on priorities in maternal education: results of Delphi and nominal group technique approaches.BMC pregnancy and childbirth · 2019Article
- Patient and Caregiver Perception of Adenoidectomies: A Non-Real-World Social Media Analysis.OTO openArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient and public involvement in health research is important to produce relevant and impactful results.
objectiveThis 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.
methodsWe 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.
resultsOur 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.
conclusionsWith 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.