Study to assess Factors influencing health-related Quality of life in people with Type-1 Diabetes mellitus and their Caregiver Burden in Vijayapura district

Abstract

Introduction: Type-1 Diabetes Mellitus (T1DM) presents a significant and growing public health challenge in low- and middle-income countries, particularly among children and adolescents. In 2021, approximately 8.4 million people worldwide had T1DM, with 1.5 million under 20 years old. The prevalence is projected to increase significantly by 2040, especially in low-income countries. In India, the exact rates are hard to determine due to the lack of a comprehensive registry, but T1DM is increasing at an estimated 3-5% per year. Karnataka alone reports a prevalence of 17.9 cases per 100,000 children, highlighting the need for more focused attention and resources for this population. Managing T1DM is a demanding task requiring strict adherence to daily insulin injections and continuous blood glucose monitoring, which is particularly challenging during adolescence. Poor adherence can lead to severe complications and a lower quality of life. The burden of managing T1DM extends to caregivers, who face significant emotional, financial, and logistical challenges. High levels of stress, financial burden, and lack of adequate support leads to caregivers burden. This study aims to identify factors affecting the quality of life of T1DM patients and their caregivers in the Vijayapura district, Karnataka. Objectives: To assess the health-related Quality of life and well-being and factors influencing the Quality of life among Type 1 Diabetes Mellitus(T1DM) Patients. To explore caregivers’ knowledge, attitude, and practice toward T1DM care. To assess caregiver burden and provide Health education to caregivers about coping strategies. Materials & Methodology: This is a cross-sectional study conducted in the Vijayapura District among T1DM Patients. All patients who met the inclusion criteria were included in the study. In-person interviews were conducted using semi-structured questionnaires to collect socio-demographic data and KAP of caregivers. Additionally, Dawn youth QOL scale, Zarit burden interview & WHO Well-being scales were utilized to assess the Quality of life and well-being of T1DM Patients & their caregiver’s burden. Statistical Analysis: The data was entered into an Excel spreadsheet and then analyzed using SPSS version 26. Descriptive statistics such as frequencies, percentages, and diagrams were employed to analyze the data. The chi-square test was utilized to examine the statistical associations between the Quality of life, Wellbeing & caregivers’ burden and other independent variables. Binary logistic regression was performed for the variables, which were showing statistically significant association. Results & Conclusion: We found that most of the Primary caregivers were mothers (75%), and the majority (84%) were nuclear families. A significant proportion of patients resided in rural areas (61%). The predominant age group among T1DM patients was 11-15 years (45%). Most common clinical characteristics in T1DM patients revealed, with symptoms of frequent urination (41%), giddiness (30%), and abdominal pain (24%). Sleep patterns were reportedly disturbed in 39% of patients, and 29% had irregular bowel and bladder habits. The majority of patients (78%) had been diagnosed with diabetes for more than a year. In terms of T1 DM control, 55% of patients had poorly controlled HbA1c levels (>7.5%), and 30% required insulin thrice daily. In the Quality-of-life (Impact of activities domain), Age group and quality of life were statistically associated. Poor QOL was reported more among the age group 16-25 years (56%) compared to 6-15 years. In the domain worries about the diabetes, the Age group & Diabetes duration was found to be statistically associated with the Quality of life (QOL). In the QOL domain of health perception, individuals from nuclear families are having 2.8 times more risk compared to those from joint & three-generation families. In the Care givers burden, 51% experienced a moderate burden and 33% felt mild burden. Age group of patients showed statistically significant association with the caregiver’s burden. Moderate and severe burden were more among the mothers who are caring for younger age group (6-15 years) Patients, compared to age group of 16-25 years. WHO well-being screening for T1DM, showed that 51% of the participants have a poor well being score. In this diabetes duration was found statistically associated with Well-being of the patient. Our study on T1DM among children and adolescents, along with their caregivers, has provided significant insights into the multifaceted challenges they face. This research highlights the complex interplay of sociodemographic factors, clinical management challenges, caregiver burden, Quality of life & patient well-being in the context of T1DM.