Health Related Quality of Life of Children with Intestinal stomas, a cross-sectional study at Mulago Hospital.

Abstract

Background: In Uganda, like elsewhere on the globe, hundreds of children end up receiving stomas as part of their surgical care. It is also of paramount importance to know the effect of any medical/surgical intervention on the children’s’ quality of life, as this fosters efforts towards improvement. However, no study has been conducted in our setting to evaluate the quality of life of children living with colostomies or ileostomies. Objective: To determine the health related quality of life of children aged 1-12 years with intestinal stomas at least one-month post surgery at Mulago hospital. Methods: This was a cross-sectional study with a mixed methods approach. 109childrenwere recruited from the paediatric surgical outpatient at the Mulago Hospital. Written informed consent and assent were obtained from caregivers and children older than 7 years. Quantitative methods were used to determine the HRQoL while qualitative data helped better understand the experiences of children with intestinal stomas. Consecutive enrollment was done. The health related quality of life of children with intestinal stomas was assessed using the Pediatric inventory Quality of Life Questionnaire (Ped QLTM). Qualitative data was obtained by conducting in-depth interviews (IDI) with caretakers and older children. Results: o This study recruited 109 participants, 58.7% were males while 41.3% were females. The mean age was 54.98 months with the minimum being 12 months and maximum being 361 months o Ninety two point one percent (92.1%) of the children had good HRQoL scores while 7.9% had poor HRQoL scores. o Children whose caregivers were divorced were 5.63(1.120 -28.242) times more likely to have a poor HRQoL compared to those whose caretakers were married Pvalue of 0.024. o Majority 75% of the caregivers whose children had poor HRQoL scores were earning less than 150,000 per month. Their children were 4.55(0.450- 46.112) times more likely to have a poor HRQoL score compared to those whose caregivers were earning more than 150,000 o Qualitative component came up with the following themes; physical problems, physical disablement, physical and social activities, psychological effects, demanding family support and dietary support. The themes were in line with the aspects being studied in the quantitative arm of the study.

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Conclusions: o Though generally the global HRQoL of children at Mulago with stomas is good, there was a significant prevalence of poor quality of life of children with stomas from single/divorced parents due to lack of resources. Recommendations: o Prospective cohort study over a longer study period of time for children with stomas o Increased need for preoperative counseling, stoma care teaching and looking out for stoma complications. Keywords: o Intestinal Stoma o Health Related Quality Of Life