Exploring Factors Associated with Quality of Life in Caregivers of Children and Adolescents with Sickle Cell Disease and HIV: A Comparative Analysis

TL;DR

Caregivers of children with sickle cell disease have lower quality of life than those caring for children with HIV in Cameroon, due to factors like depression and medication costs.

Contribution

This study compares quality of life between caregivers of children with sickle cell disease and HIV, identifying specific factors impacting their well-being.

Findings

Caregivers of HIV patients had significantly better quality of life than those of SCD patients.

Depression and anxiety scores were strongly associated with lower quality of life in caregivers.

Lower medication costs and being an SCD caregiver independently predicted lower quality of life.

Abstract

Paediatric HIV and sickle cell disease (SCD) are two stigmatising and potentially fatal illnesses that place a significant burden on families. HIV patients benefit from a longstanding free-service national programme in Cameroon, and this could considerably alleviate burden of care on HIV caregivers, possibly leading to better quality of life (QoL) in HIV caregivers compared to SCD caregivers. Our study aimed to compare the QoL between caregivers of children and adolescents with SCD and HIV and explore factors associated with this QoL in Cameroon.

We conducted a hospital-based cross-sectional analytic study at Douala Laquintinie Hospital from February to May 2023. A questionnaire was administered to caregivers of paediatric patients (≤18 years) with SCD and HIV. The Pediatrics Quality of Life-Family Impact Module (PedsQL FIM), the 7-item Generalized Anxiety Disorder (GAD-7), and the 9-item Patient Health Question (PHQ-9) tools were used as measures of quality of life, anxiety, and depression, respectively. Multivariable linear regression was used to determine factors associated with quality of life. A significance level was set at p < 0.05.

We included 199 caregivers: SCD = 104 and HIV = 95. The mean age of caregivers in our sample was 40.47 ± 10.18 years. Caregivers of paediatric patients with HIV had a better mean quality of life than SCD (93.01 ± 7.35SD versus 64.86 ± 9.20SD, p < 0.001). PHQ-9 score (B = −1.52, 95% CI = [-2.08; −0.96], p=<0.001), GAD-7 score (B = −1.46, 95% CI = [-2.09; −0.83], p=<0.001), spending less than 75 000 FCFA on medications monthly (B = 12.13, 95% CI = [5.73; 18.94], p=<0.001), and being a SCD caregiver (B = −11.62, 95% CI = [-18.46; −4.78], p=0.001) were factors independently associated with quality of life on multivariable analysis.

Quality of life is lower in caregivers of children and adolescents with SCD than with HIV. Preventing depression and anxiety as well as advocating for the subsidization of medications through a national SCD program may improve quality of life in SCD caregivers.

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