Physical self-concept and ability to swim in patients born with anorectal malformation and Hirschsprung’s disease: a case control study

BACKGROUND: Children with anorectal malformation (ARM) and Hirschsprung’s Disease (HD) live with permanent urinary and bowel symptoms, possibly impairing motor development in early childhood. Not being able to swim adds an unnecessary health risk. The aim of this study was to determine the ability to swim and physical self-concept in patients with ARM and HD. METHODS: We performed an anonymous survey among the members of the national patient organization SoMA e.V. (6 through 25 years). A control group was recruited from our department. Ability to swim, symptom load according to Rintala Score and physical self-concept were recorded using validated questionnaires. Patients were matched with controls according to gender and age. Mean scores and 95%-confidence intervals (95%-CI) were calculated, χ(2)-test and multiple linear regression models were used as appropriate. RESULTS: Totally, 83 match-control-pairs were included. Patients learned to swim at a similar age and rate (6.5 years, 95%-CI: 6.1–6.9, 74.7% swimmers) compared to controls (6.4 years, 95%-CI: 6.1–6.8, 79.5% swimmers, p = 0.46). VACTERL patients had a significantly lower swimmer rate (59.1%, p = 0.048). Swimmers had a significantly higher mean Rintala Score (12.5, 95%-CI: 11.6–13.2) compared to non-swimmers (10.4, 95%-CI: 8.1–12.1, p = 0,049). In prepubertal children (6 through 12 years), no difference in physical self-concept was shown compared to controls. Adolescents and young adults with ARM/HD, especially females, had a significantly lower mean score for the subscales of flexibility, speed, endurance and sports competence, independent of bowel symptom load according to Rintala Score. CONCLUSIONS: Patients with ARM/HD have normal swimming skills and a normal physical self-concept in childhood that decreases with age compared to peers. In adolescence, parents and health care professionals should actively promote physical activity in ARM/HD patients. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-022-03782-5.