Objectives: To assess the long-term quality of life of family members of paediatric patients with congenital anomalies undergoing multiple corrective surgeries and to identify the factors associated with better outcomes. Materials and Methods: This study is an outpatient-based based retrospective, record-based cohort study carried out at two tertiary care centres of northern India from 2020 to 2021. The cohort of patients who were followed from 2011 to 2021 at these centres was included. Patients of 5 to 12 years of age with congenital anomalies undergoing multiple corrective surgeries (>5) with their families attending the paediatric surgery OPD were included. A questionnaire derived from the Childhood Behaviour Checklist and the Paediatric Quality of Life Inventory (PedsQL) was used to evaluate psychosocial comorbidities. Results: The mean age of the patients was 9.5 (± 1.5) years, with female preponderance (54.75%). The commonest psycho-social problem encountered among the patients was behavioural problems, followed by increased screen time among the children. Factors associated with better psychosocial adaptation and lower problems includes adequate counselling (>4), lesser number of surgeries (i.e. <10), early age of psycho-therapeutic interventions in form of counselling (i.e. between 5-7 years), less hospital visits (<10 per year) and neural tube defects & hydrocephalus as compared to other anomalies (GIT and GUT). Conclusion: Multiple corrective surgeries are associated with significant psycho-social problems in these children and their families. Adequate counselling beginning in the early age group for these patients is associated with better psycho-social adaptation.
Khanna et al. (Fri,) studied this question.