Reaching adulthood with Hirschsprung's disease: Patient experiences and recommendations for transitional care.

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.

Prolapse of the rectum, long-term results of surgical treatment.

AIMS: This study evaluates patency and functional results of abdominal and perineal treatment approaches to prolapse of the rectum. METHODS: A database search identified patients operated upon for prolapse of the rectum. The operations were abdominal or perineal approaches. The patient's records were reviewed, patients alive were contacted, and a self-report form evaluated functional results. Patients were followed until the prolapse recurred. RESULTS: A primary operation for prolapse of the rectum was performed in 56 patients. Median age was 59 years (range 20-87) and 78 (40-91) for abdominal and perineal approaches, respectively (p < 0.001). The average length of the prolapses was 8.7 cm (2-25) and 8.6 cm (2-15) for abdominal or perineal approaches. All prolapses treated with a Thiersch's operation recurred within a few months and all prolapses treated with the Delorme's operation recurred within 5 years, whereas the 5-year patency of the abdominal approach was 93% (p < 0.001). No prolapses recurred after mesh rectopexy and the 5-year patency of resection rectopexy was 86%. The abdominal approaches improved stool evacuation and constipation significantly, and anal leakage improved somewhat (p = 0.065). The median hospital stay was 11 (4-20) and 7 (2-155) days after abdominal and perineal approaches (p = 0.003). Complications occurred in 20% of patients. CONCLUSIONS: 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.