Quality of children’s life after surgical correction of congenital colorectal pathology

Abstract

The main problems that arise in children operated on for Hirschsprung's disease (HD) or anorectal malformations (ARM) in the long term are persistent defecation disorders manifested in the form of constipation or fecal incontinence (FI), as well as their combination. Violation of the act of defecation, regardless of its cause, contributes to the formation of a number of complex psychological, medical and social problems that affect the moral and physical condition of children, resulting in reduced quality of life (QoL). The purpose - to study QoL in children operated on in the clinic for congenital colorectal pathology and to evaluate the objectivity of the pathology-specific QoL questionnaire. Materials and methods. Clinical examination and treatment of 92 children with HD and ARM were performed. Questionnaires to determine the level of QoL were conducted in 79 operated children 6-17 years, including 51 (64.56%) children with HD and 28 (35.44%) patients with ARM. These patients formed the main group. Questionnaires were also conducted in 30 somatically healthy children without colorectal pathology of the same age. They formed a control group. Children who had postoperative complications were additionally interviewed before and after treatment of these complications (conservative or surgical). We selected the Hirschsprung’s disease Anorectal malformation QoL questionnaire (HAQL). We translated the HAQL questionnaire into Ukrainian and adapted it to the social, educational and cultural characteristics of Ukrainian people. We also modified it, simplified the issues a bit and integrated it into one form for better comparison of QoL between different groups of patients. Results. We identified 4 degrees of QoL violation in children of the main group: mild - with a sum of 74-105, moderate - with a score of 38-73, severe - with a score of 10-36, very severe - 0-9 points. In 19 children (24.05%) QoL was not violated, the average score was 108.4±2.5. The majority (39 patients, 49.37%) had a mild degree of QoL violation, the mid degree was in 17 (21.52%) children, severe QoL violation was found in 4 (5.06%) patients. There were no children with very severe QoL disorders. In children, the level of QoL was slightly higher after correction of ARM. The severity of QoL disturbance depended on the form of congenital colorectal pathology and the presence of pre- and postoperative complications. Among children with ARM, more severe QoL disorders were observed in high forms, among patients with HD more severe disorders were found in patients with a long zone of agangliosis, with acute and subacute forms of the disease and in children with serious preoperative complications. There were no significant gender differences in the violation of QoL in children of the main group. The level of QoL was higher in children aged 12-17 years than in patients aged 6-11 years. In older children, a higher average score was observed in the sections of the questionnaire related to defecation control. At the same time, children in this age group have lower scores in the sections on emotional and social functioning and body sensation. When re-interviewing 45 (56.96%) patients who had distant postoperative complications and defecation disorders, after conservative or surgical treatment, the level of QoL was increased in all cases. Conclusions. QoL disorders of varying severity were found in 60 (75.95%) of children operated on for HD and ARM. The majority of patients (39 children, 49.37%) had a mild degree, and 4 (5.06%) of children had a severe degree of QoL violation. The proposed HG and ARM-specific child quality of life questionnaire is a convenient and objective tool for assessing the quality of life of operated children. It allows you to assess not only postoperative functional outcomes, but also psychosocial and emotional aspects of the lives of operated children. It also allows you to compare the results of treatment in different clinics and makes these comparative results transparent. The research was carried out in accordance with the principles of the Helsinki Declaration. The study protocol was approved by the Local Ethics Committee of all participating institutions. The informed consent of the patient was obtained for conducting the studies. No conflict of interests was declared by the authors.