Laura Judd-Glossy1,2,3, Merlin Ariefdjohan4,5, Stefanie Curry6, Jill Ketzer6, Alberto Pena6,7, Andrea Bischoff6,7. 1. Department of Psychiatry, Child and Adolescent Division, University of Colorado Denver, Anschutz Medical Campus, Aurora, USA. Laura.Judd-Glossy@childrenscolorado.org. 2. Pediatric Mental Health Institute, Children's Hospital Colorado, Aurora, USA. Laura.Judd-Glossy@childrenscolorado.org. 3. International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, USA. Laura.Judd-Glossy@childrenscolorado.org. 4. Department of Psychiatry, Child and Adolescent Division, University of Colorado Denver, Anschutz Medical Campus, Aurora, USA. 5. Pediatric Mental Health Institute, Children's Hospital Colorado, Aurora, USA. 6. International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, USA. 7. Department of Surgery, University of Colorado Denver, Anschutz Medical Campus, Aurora, USA.
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.
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.
Authors: Laura Judd-Glossy; Merlin Ariefdjohan; Jill Ketzer; Lea A Wehrli; Alberto Pena; Luis de la Torre; Andrea Bischoff Journal: Pediatr Surg Int Date: 2022-09-21 Impact factor: 2.003
Authors: M C Vargas; L A Wehrli; A Louiselle; J Ketzer; M L Reppucci; L Juddy-Glossy; V I Alaniz; D T Wilcox; D N Wood; A Peña; L De La Torre; A Bischoff Journal: Pediatr Surg Int Date: 2022-09-21 Impact factor: 2.003
Authors: Laura Judd-Glossy; Merlin Ariefdjohan; Jill Ketzer; Kristina Matkins; Julie Schletker; Amy Krause; Hope Simmons; Alberto Pena; Luis De La Torre; Andrea Bischoff Journal: Pediatr Surg Int Date: 2021-09-25 Impact factor: 2.003
Authors: Emily G Miller; Amanda L Woodward; Grace Flinchum; Jennifer L Young; Holly K Tabor; Meghan C Halley Journal: Genet Med Date: 2021-07-19 Impact factor: 8.864