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

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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.

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Acknowledgements

The authors of this study would like to thank Mr. Greg Ryan for assisting us with the administration of the survey, and members of the support group who generously shared their perspectives on living with anorectal malformations through their candid responses.

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Authors and Affiliations

  1. Department of Psychiatry, Child and Adolescent Division, University of Colorado Denver, Anschutz Medical Campus, Aurora, USA

    Laura Judd-Glossy & Merlin Ariefdjohan

  2. Pediatric Mental Health Institute, Children’s Hospital Colorado, Aurora, USA

    Laura Judd-Glossy & Merlin Ariefdjohan

  3. International Center for Colorectal and Urogenital Care, Children’s Hospital Colorado, Aurora, USA

    Laura Judd-Glossy, Stefanie Curry, Jill Ketzer, Alberto Pena & Andrea Bischoff

  4. Department of Surgery, University of Colorado Denver, Anschutz Medical Campus, Aurora, USA

    Alberto Pena & Andrea Bischoff

Authors
  1. Laura Judd-Glossy
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  2. Merlin Ariefdjohan
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  3. Stefanie Curry
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  4. Jill Ketzer
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  5. Alberto Pena
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  6. Andrea Bischoff
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Correspondence to Laura Judd-Glossy.

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Judd-Glossy, L., Ariefdjohan, M., Curry, S. et al. A survey of adults with anorectal malformations: perspectives on educational, vocational, and psychosocial experiences. Pediatr Surg Int 35, 953–961 (2019). https://doi.org/10.1007/s00383-019-04508-y

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  • DOI: https://doi.org/10.1007/s00383-019-04508-y

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