Abstract
BackgroundQuality of life (QoL) is one of the important outcomes for patients with Hirschsprung disease (HSCR) after pull-through that provides qualitative data concerning the long-term outcomes, however, it has not been well-studied. The HSCR/anorectal malformation quality of life questionnaire (HAQL) is considered valid and reliable to evaluate the QoL of HSCR patients. Material and methodsA mixed-method sequential explanatory cohort study was conducted to compare the QoL of HSCR patients after Duhamel and Soave pull-through at Dr. Sardjito Hospital between 2013 and 2018 using an Indonesian adaptation of the HAQL, followed by a qualitative study. ResultsWe ascertained eleven HSCR patients (Duhamel: five HAQL parents and one HAQL adolescent vs. Soave: four HAQL parents and one HAQL adult). For the quantitative study, the mean HAQL score was 2.50 and 2.79 for the Duhamel and Soave groups, respectively. For the qualitative study, interviewed patients' parents expressed how their child's life had improved after surgery. However, frequent bloating was a major complaint following Soave surgery, whereas hardened stools were a major problem after Duhamel procedure. ConclusionHere, for the first time using a mixed-method sequential explanatory cohort design, we show that patients with HSCR after Soave tended to have a higher overall QoL score compared to the Duhamel group. Further multicenter study with a larger sample size is mandatory to give better understanding about QoL of HSCR patients following pull-through.
Highlights
Hirschsprung disease (HSCR) is a complex genetic disorder defined as the absence of ganglion cells in the distal bowel extending proximally over a varying length of the intestines, resulting in functional obstruction in infants [1]
The HSCR/anorectal malformation quality of life questionnaire (HAQL) is considered valid and reliable to evaluate the Quality of life (QoL) of HSCR patients after definitive surgery in several languages [9,10,11,12]
We determined the QoL of HSCR patients after Duhamel and Soave procedures using an Indonesian adaptation of HAQL
Summary
Hirschsprung disease (HSCR) is a complex genetic disorder defined as the absence of ganglion cells in the distal bowel extending proximally over a varying length of the intestines, resulting in functional obstruction in infants [1]. The HSCR/anorectal malformation quality of life questionnaire (HAQL) is considered valid and reliable to evaluate the QoL of HSCR patients after definitive surgery in several languages [9,10,11,12]. Quality of life (QoL) is one of the important outcomes for patients with Hirschsprung disease (HSCR) after pull-through that provides qualitative data concerning the long-term outcomes, it has not been well-studied. Material and methods: A mixed-method sequential explanatory cohort study was conducted to compare the QoL of HSCR patients after Duhamel and Soave pull-through at Dr Sardjito Hospital between 2013 and 2018 using an Indonesian adaptation of the HAQL, followed by a qualitative study. Conclusion: Here, for the first time using a mixed-method sequential explanatory cohort design, we show that patients with HSCR after Soave tended to have a higher overall QoL score compared to the Duhamel group. Further multicenter study with a larger sample size is mandatory to give better understanding about QoL of HSCR patients following pull-through
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