Background/Purpose: The need for transitional care has gained increased focus in the treatment of patients with congenital colorectal disorders. We aimed to acquire in-depth knowledge about the experiences of adult patients with Hirschsprung's disease (HD) and their suggestions for transitional care. Methods: Binational study applying gender equal focus group interviews (FGI). Results: Seventeen (9 men) of 52 invited patients with median age 29 (19-43) years participated. Three themes evolved from the FGI. "Scarred body and soul" describes the somatic and psychosocial challenges the patients experienced and "limited health literacy on HD" refers to the patients' lack of HD knowledge. "Absent transition" depicts missing transitional care and the patients' inability to find adult HD specialists. The adult HD patients strongly recommended transitional care from early teens with focus on information about HD and establishment of a peer-to-peer program. They also emphasized the possibility of being referred to a pelvic floor center. Conclusions: HD negatively influences patients' somatic and psychosocial health in childhood, adolescence and adulthood. Adult HD patients strongly recommend transitional care from early teens and the possibility for referral to a center working with pelvic floor dysfunctions.
Aim Hirschsprung's disease is a congenital disorder requiring surgery. Most children operated on for Hirschsprung's disease experience postoperative bowel dysmotility. Although various food is known to influence bowel motility, evidence of diet's role and dietary guidelines in treatment of bowel dysfunction in Hirschsprung's disease is lacking. The aim was to explore parental experiences of dietary effects on bowel function in children with Hirschsprung's disease. Methods A qualitative study including three focus groups with ten parents of children with Hirschsprung's disease at a national Hirschsprung's disease centre. Data were analysed through content analysis. Results Parents emphasised diet as a strong influencer on their child's bowel function in Hirschsprung's disease. They expressed great concerns about their responsibility and strived hard to explore and adjust dietary habits to control the child's bowel function. Families’ daily and social lives were influenced by the child's diet and bowel function. The parents desired dietary support and guidelines to improve their confidence in self‐treatment of Hirschsprung's disease. Conclusion Dietary habits play a key role in parental self‐treatment of bowel function in their children with Hirschsprung's disease. Dietary guidelines for patients with Hirschsprung's disease are anticipated.
Aim of the Study To assess the frequency of and identify contributing factors to wound dehiscence after posterior sagittal anorectoplasty (PSARP) in children born with anorectal malformations (ARM). Methods Ethical approval was obtained (DNR 2017/191). Charts of all children with anorectal malformations (ARM) reconstructed with PSARP, limited PSARP, or PSARVUP at a tertiary centre of paediatric surgery between 2001 and 2016 were reviewed. Wound dehiscence within 30 days postoperatively was analysed regarding gender, prematurity, birth weight, type of ARM, other congenital malformations, single- or multistaged reconstruction, age and weight at reconstruction, postoperative antibiotics, and fasting. Multiple regression analysis was performed for risk factors in single-stage PSARP or limited PSARP, presented as odds ratio (OR) with 95% confidence interval (CI). Main Results Ninety patients were included, of which 53 (59%) were males. Single-staged PSARP was performed in 40 (44%) patients and 50 (56%) had a multistaged reconstruction with a colostomy. Wound dehiscence was significantly more common among patients without a colostomy; 17 (43%) vs. 11 (22%) (p=0.043). In patients with single-stage PSARP, no single factor was identified to increase the risk for wound dehiscence: cardiac malformations (OR 3.73) (95% CI 0.78-17.88), low weight at surgery (OR 1.56) (95% CI 0.36-6.99), antibiotics < 1 day (OR 1.6) (95% CI 0.43-5.94), or short fasting 0-3 days (OR 4.44) (95% CI 0.47-42.18). Conclusions A divided colostomy protected against wound dehiscence after PSARP. No risk factor for wound dehiscence after single-staged PSARP was identified. Further studies are needed to establish contributing factors to uncomplicated wound healing after PSARP.
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