Selected Papers from the OASIS (Holistic Care in Hirschsprung’s Disease) Meeting

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Nursing".

Deadline for manuscript submissions: 5 July 2024 | Viewed by 1213

Special Issue Editor


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Guest Editor
Klinik für Kinderchirurgie, Chirurgische Klinik und Poliklinik, Universität Rostock Uniklinikum und Medizinische Fakultät, Rostock, Germany
Interests: pediatric surgery; colorectal surgery

Special Issue Information

Dear Colleagues,

Hirschsprung Disease (HSCR) is a rare condition affecting the motility of the enteric system and resulting in obstruction of the bowel. Its most severe form, Total Colonic Aganglionosis (TCA), occurs in 2–5 % of all children with HSCR.

Patients should be managed by specialized medical personnel familiar with the disease.

Competence in the management of Hirschsprung’s Disease is not only defined by an ability to perform complex surgery; it is also based on diagnostic processes, handling complications and addressing long term effects of the malformation.

Therapeutic strategies must be adjusted in line with current scientific knowledge and should increase the quality of life in patients as well as maintain continuity through transition of care.

At the OASIS Symposium, clinicians, researchers and patients (representatives) from all over Europe will work together on a holistic approach to care.

There will be a particular focus on:

  • Patients and Family needs before and after surgery;
  • Patient support groups for Hirschsprung’s Disease in Europe as well as ideas for cross-collaboration;
  • Diagnostic pathways;
  • Surgical Strategies in Hirschsprung’ Disease and total colonic aganglionosis;
  • Optimal bowel management;
  • Holistic Continence Score;
  • Nutrition and Microbioma;
  • Quality of life aspects; longitudinal follow up;
  • Transition of care.

The Symposium will be open to everyone. We want clinicians (doctors and allied health professionals), scientists and patient associations to come together to share their clinical experiences and discuss together how to achieve the best level of care for this patient group and their families.

More information please contact us: OASIS.HolisticHirschsprungs@gmail.com (https://forms.gle/CdHppxTobEY9ShiXA).

This Special Issue will also focus on other articles or reviews related to Hirschsprung’s Disease (OASIS).

Prof. Dr. Stefanie Märzheuser
Guest Editor

Manuscript Submission Information

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Keywords

  • Hirschsprung’s disease
  • total colonic aganglionosis
  • self-help-group
  • quality of life

Published Papers (1 paper)

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Research

12 pages, 664 KiB  
Article
Children with Hirschsprung’s Disease Report Dietary Effects on Gastrointestinal Complaints More Frequently than Controls
by Lovisa Telborn, Christina Granéli, Irene Axelsson and Pernilla Stenström
Children 2023, 10(9), 1543; https://doi.org/10.3390/children10091543 - 12 Sep 2023
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Abstract
Hirschspung’s disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied by GI complaints. Despite the lack of evidence regarding whether diet affects GI symptoms, advice on dietary changes is common. The aim was to investigate self-reported dietary effects on GI symptoms, comparing [...] Read more.
Hirschspung’s disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied by GI complaints. Despite the lack of evidence regarding whether diet affects GI symptoms, advice on dietary changes is common. The aim was to investigate self-reported dietary effects on GI symptoms, comparing children with HD with healthy children. This was an observational, cross-sectional, self-reported case-control study using the validated Diet and Bowel Function questionnaire. All children with HD aged 1–18 years were surgically treated during 2003–2021 at a national HD center, and their parents were invited to participate. Healthy children served as controls. The data were presented as median (range) and n (%). 71/85 children with HD (6 years (1–17); 76% boys) and 265/300 controls (9 years (1–18); 52% boys) participated. Dietary effects on GI symptoms were reported more frequently by children with HD than controls (55/71 [77%] vs. 137/265 [52%], p ≤ 0.001), as were dietary adjustments to improve GI symptoms (49/71 [69%] vs. 84/265 [32%], p ≤ 0.001), and social limitations due to dietary adjustments (20/48 [42%] vs. 22/121 [18%], p = 0.002). Of 90 food items, children with HD reported that more of the items induced GI symptoms compared to controls (7 (0–66) vs. 2 (0–34), p = 0.001). Diet-induced GI symptoms and dietary adjustments’ impact on daily life are reported more frequently by children with HD than controls. Moreover, the number and types of food items causing GI symptoms differ. The results indicate the need for disease-specific dietary advice to improve support for families of children with HD. Full article
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