Victoria A Lane1, Kristine M Nacion2, Jennifer N Cooper2, Marc A Levitt3, Katherine J Deans4, Peter C Minneci5. 1. Center for Colorectal and Pelvic Reconstruction, Nationwide Children's Hospital, Columbus, OH, USA; Center for Surgical Outcomes Research, The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA; Department of Pediatric Surgery, Nationwide Children's Hospital, Columbus, OH, USA. 2. Center for Surgical Outcomes Research, The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA. 3. Center for Colorectal and Pelvic Reconstruction, Nationwide Children's Hospital, Columbus, OH, USA; Department of Pediatric Surgery, Nationwide Children's Hospital, Columbus, OH, USA. 4. Center for Surgical Outcomes Research, The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA; Department of Pediatric Surgery, Nationwide Children's Hospital, Columbus, OH, USA. 5. Center for Surgical Outcomes Research, The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA; Department of Pediatric Surgery, Nationwide Children's Hospital, Columbus, OH, USA. Electronic address: peter.minneci@nationwidechildrens.org.
Abstract
BACKGROUND: Health related Quality of Life (HRQoL) is an important outcome in medical care. The aim of our study was to identify characteristics associated with lower HRQoL scores in children with anorectal malformation (ARM) and Hirschsprung disease (HD). METHODS: Patients younger than 18years, with HD or ARM, who were evaluated at our center from April 2014 to August 2015, were identified. The results of comprehensive questionnaires regarding diagnosis, symptoms, comorbidities and previous medical/surgical history, and validated tools to assess urinary status, stooling status and HRQoL were evaluated. RESULTS: In children aged 0-4years, vomiting and abdominal distension were found to be associated with a significant reduction in total HRQoL scores. In children >4years of age, vomiting, nausea, abdominal distension, and abdominal pain were also associated with a significantly lower HRQoL. The strongest predictor of lower HRQoL scores on regression tree analysis, in all age groups, was the presence of a psychological, behavioral or developmental comorbidity. CONCLUSION: Patients with either HD or an ARM who have a psychological, behavioral or developmental problem experience significantly lower HRQoL than children without such problems, suggesting that provision of behavioral/developmental support as part of the multidisciplinary care of these children may have a substantial impact on their HRQoL.
BACKGROUND: Health related Quality of Life (HRQoL) is an important outcome in medical care. The aim of our study was to identify characteristics associated with lower HRQoL scores in children with anorectal malformation (ARM) and Hirschsprung disease (HD). METHODS:Patients younger than 18years, with HD or ARM, who were evaluated at our center from April 2014 to August 2015, were identified. The results of comprehensive questionnaires regarding diagnosis, symptoms, comorbidities and previous medical/surgical history, and validated tools to assess urinary status, stooling status and HRQoL were evaluated. RESULTS: In children aged 0-4years, vomiting and abdominal distension were found to be associated with a significant reduction in total HRQoL scores. In children >4years of age, vomiting, nausea, abdominal distension, and abdominal pain were also associated with a significantly lower HRQoL. The strongest predictor of lower HRQoL scores on regression tree analysis, in all age groups, was the presence of a psychological, behavioral or developmental comorbidity. CONCLUSION:Patients with either HD or an ARM who have a psychological, behavioral or developmental problem experience significantly lower HRQoL than children without such problems, suggesting that provision of behavioral/developmental support as part of the multidisciplinary care of these children may have a substantial impact on their HRQoL.
Authors: See Wan Tham; Michael D Rollins; Ron W Reeder; Katelyn E Lewis; Casey M Calkins; Jeffrey R Avansino; Tonya M Palermo Journal: J Pediatr Surg Date: 2022-04-23 Impact factor: 2.549
Authors: Rosanne M Smits; Eline Vissers; Rosan Te Pas; Noor Roebbers; Wout F J Feitz; Iris A L M van Rooij; Ivo de Blaauw; Chris M Verhaak Journal: Orphanet J Rare Dis Date: 2022-04-04 Impact factor: 4.123