Presenter Status
Fellow
Abstract Type
Research
Primary Mentor
Rebecca M Rentea, MD MS
Start Date
13-5-2021 11:30 AM
End Date
13-5-2021 1:30 PM
Presentation Type
Poster Presentation
Description
Background: While great strides have been made in surgical techniques and bowel management therapies for patients with anorectal malformations (ARM) and Hirschsprung’s disease (HSCR), little is known about psychosocial and behavioral factors that impact the quality of life at each stage of development.
Objectives/Goal: We aimed to perform a qualitative literature review to highlight the psychosocial, emotional, and behavioral themes that affect the quality of life as patients born with congenital colorectal disease.
Methods/Design: A systematic literature review of all articles published between 1980-2019 was performed in the PubMed and CINAHL databases. Inclusion criteria included articles that reported on the quality of life measures not directly related to bowel function and included data on patients aged 0-21 years old. 218 articles were pulled from the initial search, while 60 articles were used for data extraction and synthesis. Data were separated based on distinct developmental time points: infancy, childhood, adolescence, and young adulthood. As this is a qualitative review, no statistical analysis was performed.
Results: In the neonatal period, parents relayed fears of uncertainty about the future, feeling overwhelmed due to lack of social and home health support, and frustration from the lack of information given to them by local providers, and being separated from their infant, who often had to be transferred to a different facility. During the school-aged years, difficulties with anxiety, peer rejection, and behavioral problems were noted in primary grades, while adolescents experienced more emotional obstacles, such as low self-confidence, poor body image, and depression. Young adults express hesitancy to enter personal/romantic relationships or engage in sexual activity. The lack of long-term follow-up among pediatric providers, incomplete or unplanned transition to adult healthcare professionals, and lack of health psychology services, leave young adults without the guidance needed to manage a chronic condition. (Table 1)
Conclusions: Multiple psychosocial issues and stressors are present in the lives of patients with ARM or HSCR. Provision of developmentally matched medical, psychological, and community-based supports for ARM and HSCR patients and their families can provide the foundation for resilience and an improved quality of life.
MeSH Keywords
Hirschsprung disease; anorectal malformation; quality of life; qualitative systematic review; psychosocial
Included in
Behavior and Behavior Mechanisms Commons, Developmental Psychology Commons, Pediatrics Commons, Surgery Commons
Psychosocial Factors Affecting Quality of Life in Patients with Anorectal Malformations and Hirschsprung’s Disease – A Qualitative Systematic Review
Background: While great strides have been made in surgical techniques and bowel management therapies for patients with anorectal malformations (ARM) and Hirschsprung’s disease (HSCR), little is known about psychosocial and behavioral factors that impact the quality of life at each stage of development.
Objectives/Goal: We aimed to perform a qualitative literature review to highlight the psychosocial, emotional, and behavioral themes that affect the quality of life as patients born with congenital colorectal disease.
Methods/Design: A systematic literature review of all articles published between 1980-2019 was performed in the PubMed and CINAHL databases. Inclusion criteria included articles that reported on the quality of life measures not directly related to bowel function and included data on patients aged 0-21 years old. 218 articles were pulled from the initial search, while 60 articles were used for data extraction and synthesis. Data were separated based on distinct developmental time points: infancy, childhood, adolescence, and young adulthood. As this is a qualitative review, no statistical analysis was performed.
Results: In the neonatal period, parents relayed fears of uncertainty about the future, feeling overwhelmed due to lack of social and home health support, and frustration from the lack of information given to them by local providers, and being separated from their infant, who often had to be transferred to a different facility. During the school-aged years, difficulties with anxiety, peer rejection, and behavioral problems were noted in primary grades, while adolescents experienced more emotional obstacles, such as low self-confidence, poor body image, and depression. Young adults express hesitancy to enter personal/romantic relationships or engage in sexual activity. The lack of long-term follow-up among pediatric providers, incomplete or unplanned transition to adult healthcare professionals, and lack of health psychology services, leave young adults without the guidance needed to manage a chronic condition. (Table 1)
Conclusions: Multiple psychosocial issues and stressors are present in the lives of patients with ARM or HSCR. Provision of developmentally matched medical, psychological, and community-based supports for ARM and HSCR patients and their families can provide the foundation for resilience and an improved quality of life.
