Assessing Quality of Life in Thalassemia Patients and their Caregivers in Larkana: A Cross-sectional Study

This study assesses the health-related quality of life (HRQoL) among transfusion-dependent thalassemia patients and their caregivers in Larkana, Sindh, Pakistan, a region with limited healthcare infrastructure. Conducted between December 2024 and May 2025 at the Fatimid Foundation Center, the cross-sectional study involved 57 patients aged 8 years and older and their primary caregivers. Using the validated TranQoL questionnaire, data were collected on physical health, emotional well-being, family support, and school functioning for patients, and additional domains like financial strain for caregivers. Results showed patients had a mean QoL Summary Score of 50.29 (SD=15.44), higher than caregivers’ 35.03 (SD=16.88), indicating a greater burden on caregivers, particularly in emotional and physical health domains. Urban children reported significantly better family health (mean=55.33) than rural children (mean=45.33, p=0.010), highlighting resource disparities. No significant gender differences were found in physical (t=-0.254, p=0.801) or emotional health (t=-0.936, p=0.882) for children. A positive correlation existed between children’s physical and emotional health (r=0.464, p<0.01). Caregivers’ low scores underscore chronic stress and potential depression, exacerbated by socio-economic challenges and caregiving demands. The study highlights the need for integrated interventions addressing medical, psychological, and social needs, particularly in under-resourced settings like Larkana. Limitations include a small sample size and lack of clinical indicators like hemoglobin levels. These findings contribute to understanding thalassemia’s multidimensional impact, advocating for targeted support to improve QoL for patients and caregivers.