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

Wittmeier, Kristy; Hobbs-Murison, Kendall; Holland, Cindy; Crawford, Elizabeth; Loewen, Hal; Morris, Mélanie; Min, Suyin Lum; Abou‐Setta, Ahmed M; Keijzer, Richard

doi:10.2196/preprints.9701

Cited by 1 publication

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References 66 publications

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“…This is of the utmost importance since the second most important aspect of care for families of patients with HSCR is represented by nutrition and growth problems. 33 Previous studies have documented that as the transition process evolves, fertility problems and concerns, as well as sexual issues, arise. 30 34 35 36 Surprisingly, although sexual problems were also reported as a typical problem for 40% of the hospitals, the referral to a sexologist is present only in six.…”

Section: Discussionmentioning

confidence: 99%

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey

et al. 2022

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This study aimed at evaluating how transition of care is currently being organized in the European Reference Networks (ERNs) health care providers (HCPs) in pediatric areas and in the Anorectal Malformation Network (ARM-Net) Consortium hospitals. An online questionnaire was sent to a total of 80 surgeons, members of or affiliated members of three networks: ARM-Net Consortium, ERN eUROGEN, and ERN ERNICA. Complete information were obtained for 45 HCPs, most of which deal with transition and still see a few adult patients (ca. 10%). Gynecological, gastroenterological, urological, colorectal, and continence issues were the major problems described by adult patients to their physicians, and in line with these prevalent complaints, they are referred to the appropriate adult specialists. Forty percent of patients complain about sexual and fertility problems, but the percentage of andrologists and sexologists involved in the caring of adult patients with ARM/Hirschsprung's disease is low, just above 10.9%. Most hospitals deal with transition, but three basic criteria (i.e., presence of: [1] an official written transitional program, [2] a transitional coordinator, and [3] written information on transition to be handled to patients) are jointly met only by six HCPs. According to the responders, the most important issue requiring improvement is the lack of interest and of specific preparation by adult specialists. The overall results of this exploratory survey confirm the need for the development of comprehensive programs for transition in these rare and complex diseases, and identify the hospitals that, in collaboration with the networks, could share best practices in organizing structured transitional pathways and well follow-ups.

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Section: Discussionmentioning

confidence: 99%

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey

et al. 2022

View full text Add to dashboard Cite

show abstract

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

Abstract: Background: Patient and public involvement in health research is important to produce relevant

Cited by 1 publication

References 66 publications

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey

The Transition of Care for Patients with Anorectal Malformations and Hirschsprung Disease: A European Survey

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