Reaching adulthood with Hirschsprung's disease: Patient experiences and recommendations for transitional care
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In brief
In brief
This binational qualitative study of 17 adult Hirschsprung disease patients reveals significant gaps in transitional care, with participants reporting lasting somatic and psychosocial challenges, limited disease knowledge, and difficulty accessing adult specialists. Patients strongly advocate for structured transition programs starting in early adolescence, including peer support and access to pelvic floor centers.
Written by the GCMD Library team from the article.
Abstract
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.
Level of evidence
IV
Type of research
Clinical