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Quality of life of Hirschsprung disease patients with a stoma
J Gracia1, S A Qisthi1, A I Rezza1
1Pediatric Surgery Division, Department of Surgery, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada-Dr. Sardjito Hospital, Yogyakarta, Indonesia.
Insights
The quality of life for Hirschsprung disease (HSCR) patients with stomas remained similar before and after the COVID-19 pandemic, with a notable exception in the social dimension reported by children.
Area of Science:
- Pediatric Surgery
- Gastroenterology
- Quality of Life Research
Background:
- Hirschsprung disease (HSCR) is a congenital gastrointestinal disorder characterized by absent nerve cells, necessitating surgical intervention often involving a stoma.
- The COVID-19 pandemic impacted healthcare access, potentially affecting the quality of life (QoL) for patients with chronic conditions like HSCR.
Purpose of the Study:
- To evaluate and compare the QoL of pediatric Hirschsprung disease patients with stomas before and during/after the COVID-19 pandemic.
- To identify any significant changes in QoL metrics attributable to pandemic-related healthcare disruptions.
Main Methods:
- A descriptive, cross-sectional study design was employed.
- Quality of life was assessed using the PedsQL Generic Core Scales 4.0 questionnaire.
- Data were collected from parent and child reports comparing pre- and post-pandemic periods.
Main Results:
- No significant overall difference in QoL was found between pre- and post-pandemic periods based on parent (p=0.88) and child (p=0.12) reports.
- A statistically significant decline was observed in the social dimension of QoL reported by children (p=0.04).
- No significant correlation was found between parent and child QoL reports (p>0.05).
Conclusions:
- Overall QoL for HSCR patients with stomas did not significantly change due to the COVID-19 pandemic.
- A specific negative impact on the social QoL dimension was reported by children.
- Further research with larger cohorts is recommended to validate these findings.
Introduction:
Hirschsprung disease (HSCR) is a genetic disorder leading to gastrointestinal obstruction due to the absence of ganglion cells in the submucosal and myenteric plexuses. Treatment typically involves a pull-through surgery, sometimes starting with a colostomy. The COVID-19 pandemic has resulted in restrictions on general patient services, i.e., non-COVID-19 patients, at health facilities, leading to reduced hospital visits, including HSCR patients with stomas. This study aimed to determine whether there were differences in the quality of life (QoL) of HSCR patients with stomas before and after the COVID-19 pandemic.
Materials And Methods:
This research was a descriptive study comparing the quality of life (QoL) of HSCR patients with stomas before and after the COVID-19 pandemic. It utilized a cross-sectional study design and assessed QoL using the PedsQL Generic Core Scales 4.0 questionnaire.
Results:
There was no significant difference in the QoL of HSCR patients before COVID-19 and after COVID-19, as indicated by parent reports (p=0.88) and child reports (p=0.12). However, there was a statistically significant difference in scores on the social dimension of child reports (p=0.04). Furthermore, there was no statistically significant relationship between parent and child reports (p>0.05).
Conclusion:
The QoL of HSCR patients with a stoma before and after the COVID-19 pandemic is similar, except for the social dimension in the child's report. Further studies with more cases are necessary to clarify the findings of this study.
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