Assessment of quality of life and effect of counseling on psychosocial development of children with congenital anomalies undergoing multiple corrective surgeries: An outpatient-based retrospective cohort study

INTRODUCTION

During a child’s early years, hospitalization and surgical operations requiring anesthesia have a profound psychological and emotional impact on their mental health.^[1,2] These experiences can manifest emotionally, behaviorally, or physically as nervousness, fear, anger, guilt, rage, or pain.^[3,4] The impact of surgery, its complications, and multiple hospital visits significantly affects the quality of life (QoL) of pediatric patients. Management of psychosocial problems is not an integral part of the treatment of such children; thus, we realized that it is important to assess the QoL of not only the pediatric patient but also their carer and siblings.^[5]

Families with patients with congenital anomalies such as neural tube defects and gastrointestinal and genitourinary anomalies have to visit the hospital multiple times. It could be related to surgery, a daycare procedure, or follow-up, investigations, repeated hospitalizations for scheduled procedures, or their consequences, all of which substantially impact the child’s psychosocial development.^[3,4,6] This amounts to a huge psychosocial burden for families, which hampers their psychosocial development and makes it difficult for them to adjust to normal society.^[7-9] It is postulated that counseling of patients and their families has a significant positive impact on alleviating these problems.^[10] Counseling sessions focusing on distress will help in alleviating the pain, burden, and anxiety issues of the parents. As a result, there is a need to quantify the burden of psychosocial problems in these families using objective psychiatric tools and to identify the factors associated with better outcomes, i.e., fewer psychosocial problems in the family.

Hence, this study was undertaken to evaluate the long-term QoL of the patients in the pediatric age group of 5–12 years who had undergone multiple corrective surgeries. The present study also aimed to assess the effect of counseling on the psychosocial development of the child in the study group.

MATERIALS AND METHODS

The present study was an outpatient-based, retrospective, record-based cohort study carried out at two tertiary care centers in northern India from 2020 to 2021.

The group of patients with their relatives who visited the pediatric surgery outpatient department (OPD) from 2011 to 2020 at these centers was included. Children born with congenital anomalies (namely gastrointestinal, genitourinary, and neurological anomalies) who have undergone multiple corrective surgeries (>5 surgeries or procedures such as urethral dilation, esophageal dilation, and others requiring general anesthesia and hospitalization), now in the age group of 5–12 years, were part of the study. Patients with baseline mental retardation or any pre-existing psychiatric disorder, patients who underwent minor procedures on an OPD basis, and patients with comorbidities who had associated other comorbidities and whose parents refused consent to counseling were excluded from the study.

The data for the study were extracted from the follow-up records of patients. Data related to psychosocial comorbidities manifestation were taken from the counseling record of the patient which had a pre-tested and pre-validated questionnaire adapted from the childhood behavior checklist,^[11] pediatric QoL,^[12] and impact of a child with congenital anomalies on parents questionnaire^[13] which is attached as supplementary material . The questionnaire was completed by the parents of the patients who accompanied them to the OPD. Data were tabulated in an Excel spreadsheet and analyzed using the Statistical Package for the Social Sciences (SPSS) 25.0. The reporting checklist for the study was based on Strengthening the Reporting of Observational Studies in Epidemiology cross-sectional study guidelines.^[14] The ethical approval for this study was exempted as it was a retrospective record-based study.

RESULTS

A total of 1154 pediatric patients who underwent multiple surgeries for congenital anomalies were considered for inclusion in the study. Out of which 674 (58.40%) were included, and the rest 480 (41.60%) patients were excluded from the study due to incomplete records and loss to follow-up, and those who missed regular visits due to personal commitments [Flowchart 1]. The mean age of patients was 9.5 (±1.5) years. 37.0% of patients were male, 8.0% had ambiguous genitalia, and the rest 55.0% were female. 60.0% of patients belonged to the upper-middle class of the Kuppuswamy socioeconomic status scale. The average frequency of hospital visits per year was 7.3 (±1.5) times per year. The average number of surgeries or procedures that the cohort underwent was 8.3 (±2.4). The detailed demographic features of the study group are presented in Table 1.

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Flowchart 1:

The schematic flow of the study.

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Three major groups of patients with congenital anomalies were included in the study, namely neurological anomalies (neural tube defect and hydrocephalus), gastrointestinal anomalies (Hirschsprung’s disease and anorectal malformation), and genitourinary anomalies (hypospadias, ambiguous genitalia, and posterior urethral valve). The genitourinary group was the most common anomaly, constituting 41.0% of the total cases, followed by neural tube defects and hydrocephalus [Figure 1]. The details of various anomalies in all three groups are shown in Figures 2 and 3.

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Figure 1:

Distribution of congenital anomalies.

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Figure 2:

Distribution of gastrointestinal anomalies.

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Figure 3:

Distribution of genitourinary anomalies.

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The common problems faced by each of the patient subgroups were categorized into physical, behavioral, and family issues, and the incidences are shown in Table 2. These physical, behavioral, and family problems indirectly form part of the quality of QoL assessment. The main difference between the three groups was different physical problems, and the difficulties of the caregiver were more prevalent in the neural tube defects.

The median scores on the questionnaire were 38 for the neural tube defect group, 32 for the genitourinary group, and 30 for the gastrointestinal group. The detailed distribution of the problem encountered is shown in Table 2. 73.29% of cases received counseling sessions (i.e., >4 counseling sessions), which was defined as adequate.

The patients were divided into two subgroups based on the median of the score on the questionnaire, i.e., 34. The characteristics of the two groups were compared using the Chi-square test to identify favorable and adverse factors. The factors significantly associated with fewer psychosocial issues with caregivers and patients were a lesser number of OPD visits, adequate counseling (defined by >4 counseling sessions), lower number of corrective surgeries (<10), and early starting of the counseling of patients and family (i.e., when child age is between 5 and 7 years) in genitourinary and gastrointestinal anomalies group as compared to neural tube defects. The ambiguous genitalia children were found to have significantly higher amounts of physical, psychosocial, and behavioral issues as compared to the kids with normal genitalia. Details of the factors associated are depicted in Table 3.

DISCUSSION

The present study was an OPD-based, retrospective, record-based cohort study carried out at two centers in Northern India, with a sample size of 674 This study is unique in the sense that the cohort of patients had a long follow-up period between 2011 and 2020 and it comprised three major groups of patients with congenital anomalies, namely neural tube defects, genitourinary, and gastrointestinal anomalies. There are only a handful of studies on this matter to date, but none of these have included such a wide cohort of the pediatric population with congenital anomalies, assessing the psychosocial burden among these patients.

CONCLUSION

Multiple corrective surgeries in pediatric patients with congenital anomalies during their formative years are associated with a significant number of psychosocial problems in these children. An adequate number of appropriately planned counseling sessions started early on in the treatment of these patients is associated with lower psychosocial problems and better adaptation by these patients, their siblings, and their caregivers. The current study emphasizes the importance of counseling as an integral part of the treatment plan for this subset of patients.