A survey of adults with anorectal malformations: perspectives on educational, vocational, and psychosocial experiences

Abstract

Purpose: Despite medical advances, individuals with anorectal malformations (ARM) experience significant medical and psychosocial challenges due to their complex conditions. This study aimed to obtain the perspectives of adults with ARM throughout their lifetime regarding their medical, school/vocational, and psychosocial functioning.

Methods: A 40-item survey was administered electronically to members of an international ARM Facebook group (56% response rate; n = 125). Survey items included demographics, medical diagnosis/treatment, school/workplace accommodations, mental health diagnosis/treatment, and life perspectives.

Results: Majority of respondents were female (73%), aged 25-34 years (31%), Caucasian (92%), US residents (60%), and attended public school (86%). 53% of respondents are currently employed. 32% of respondents received school-based accommodations and 24% at work. 58% of respondents had a mental health diagnosis, with depression (82%) and anxiety (81%) being the most common.

Conclusions: Results suggest that adults with ARM experience ongoing difficulties related to schooling, employment, and mental health, in addition to medical complications. It is becoming increasingly clear that improving patients' physical well-being is not enough; psychosocial concerns must also be addressed directly. Thus, it is important for clinicians to be aware of and partner with psychosocial providers to support these challenges associated with ARM, to maximize patients' overall health and well-being.

Keywords: Adult patients; Anorectal malformations (ARM); Fecal incontinence; International survey; Mental health; Psychosocial functioning.