Quality of life of patients with Hirschsprung disease after Duhamel and Soave pull-through procedures: A mixed-methods sequential explanatory cohort study

Background: 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, 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 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.
Results: We 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.
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.