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.
The patency of abdominal approach to prolapse of the rectum is better than that of perineal repairs. The abdominal approaches also have a favorable effect on constipation and anal insufficiency. Perineal approaches should be reserved for patients with a very short life expectancy.
ObjectivesTransitional care for adolescents with congenital malformations, such as anorectal malformations (ARM), is described sparsely in the literature and referred to as being inadequate. In order to organize future successful healthcare structures, knowledge of patient-reported important aspects of transition is required. The aim of the study was therefore to explore the needs and expectations of transitional- and adult healthcare among adolescents and adults born with ARM.MethodsTwo tertiary paediatric surgical centres, in collaboration with two tertiary pelvic floor centres, in Sweden and Norway, conducted a qualitative study, involving adolescents and adults born with ARM in focus group discussions regarding transitional care. Discussions were analyzed by qualitative content analysis. Ethical approval was obtained.ResultsSixteen participants (10 women) with a median age of 24 (19–47) years, born with mixed subtypes of ARM were included in gender-divided focus groups. Participants emphasized a need for improved knowledge of ARM, both among patients and adult care providers. Participants identified a need for support with coping strategies regarding challenging social- and intimate situations due to impaired bowel function. Participants pin-pointed well-functioning communication between the patient and the paediatric- and adult care providers as a key factor for a successful transitional process. Further, participants emphasized the importance of easy access to specialized adult healthcare when needed, suggested to be facilitated by appointed patient navigators.ConclusionAdolescents and adults born with ARM identify improved knowledge of ARM, well-functioning communication and easy access to specialized adult care as key components of a successful transition.
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