Application of the PedsQL 4.0 questionnaire in assessing the quality of life of children with defecation disorders after surgical treatment of congenital malformations

Abstract

BACKGROUND: : Fecal incontinence significantly affects the quality of life of children with anorectal malformations, Hirschsprung’s disease, and spinal pathologies.

AIM: This work uses the PedsQL 4.0 questionnaire to assess the quality of life of children with defecation disorders after surgical treatment of congenital malformations and evaluate its effectiveness.

MATERIALS AND METHODS: Interviews were conducted with 20 families in which children aged from 17 months to 18 years were operated on for spinal hernia (50%), anorectal defects (35%), and Hirschsprung disease (15%). Parents and patients were interviewed according to four blocks of the questionnaire: “The impact of pathology on the family”, “Assessment of the quality of medical care”, “Assessment of the quality of life of a child (for parents)”, “Assessment of the quality of life of a child (for children)”. The maximum score for each questionnaire was 100 points. The reliability assessment was performed using the α-survey of the Cronbach coefficient.

RESULTS: When evaluating the PedsQL 4.0 questionnaire, α-Cronbach’s coefficient for the “Impact of pathology on the family” block was 0.963, “Assessment of the quality of medical care” — 0.924, “Assessment of the quality of life of a child” from 0.740 to 0.877. A reliability result of >0.7 is considered satisfactory. Thus, the PedsQL 4.0 questionnaire was considered reliable for this study. When analyzing the block, “Influence of pathology on the family”, data from 23.6 to 67.4 points were obtained. A relationship was noted between the growing up of the child and an increase in the level of quality of life (p < 0.05). According to the block, “Assessment of the quality of medical care”, the dissatisfaction of most parents was established. The average score was 75 points. When analyzing the block, “Assessment of the quality of life of children (questionnaire for parents)”, values were obtained from 66.4 to 74.2 points. With the increase in the age of the child, parents estimated his standard of living to be lower. An inverse correlation was found between the child’s age and his standard of living from the parent’s point of view (p < 0.05). When analyzing the block, “Assessment of the quality of life of children” (questionnaire for children), the opposite situation was observed: with age, children rated the standard of living higher. The result ranged from 59.5 to 90 points.

CONCLUSIONS: In children with anorectal defects, Hirschsprung’s disease, and spinal pathologies, a significant decrease in the standard of living was revealed, including a significant negative impact of the disease on the standard of living of the entire child’s family. Further research is needed to determine the leading causes that reduce the quality of life of children to develop an integrated approach to their rehabilitation and social adaptation.

Keywords

fecal incontinence / anal atresia / Hirschsprung disease / spinal hernia / children / PedsQL / questionnaire / the quality of life

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Korolev G.A., Pimenova E.S., Morozov D.A.