What is the relationship between health-related quality of life among scoliosis patients and their caregiver burden? A cross-sectional study in China

BACKGROUND: Caregivers play a vital role in the recovery of scoliosis patients, but limited studies evaluate the caregivers’ HRQoL and burden in health care. This study aimed to explore the health-related quality of life (HRQoL) of scoliosis patients and their caregivers, and identify the factors influencing caregiver burden in Eastern China. METHODS: This cross-sectional study was conducted from August 2018 to January 2019 at the Shandong Provincial Hospital, Jinan, China. The HRQoL of scoliosis patients was measured by the Scoliosis Research Society-22r (SRS-22r), five-level EQ-5D (EQ-5D-5L) and Child Health Utility 9D (CHU9D). The caregivers’ questionnaires consist of the EQ-5D-5L, WHO-five wellbeing index (WHO-5), 22-item Zarit Caregiver Burden Interview (ZBI-22) and Social Support Rating Scale (SSRS). Spearman correlation coefficients were used to estimate the relationship among caregivers’ burden, social support, HRQoL, and SWB. Cohen’s effect size (Cohen’s d) was used to assess the ZBI-22 total score between different groups. Multiple stepwise hierarchical linear regression models were conducted to assess the associated factors of caregiver burden. RESULTS: There were 59 scoliosis patients and their caregivers (n = 59) included in the analysis. The mean health state utility of adolescent scoliosis patients (n = 39) was 0.718 (95%CI: 0.654, 0.782) based on CHU9D and adult scoliosis patients (n = 20) was 0.663 (95%CI: 0.471, 0.855) based on EQ-5D-5L. The mean health state utility of male scoliosis patients (0.792/0.667) was higher than females (0.681/0.662) based on CHU9D and EQ-5D-5L (p > 0.05), respectively. The ZBI-22 total score of scoliosis patients’ caregivers was 27.86 (SD: 20.59). Scoliosis patients’ HRQoL was significantly inversely correlated with caregiver burden, and the HRQoL and subjective wellbeing (SWB) of caregivers were moderately and inversely correlated with caregiver burden. The regression results showed that the patients’ age and caregivers’ SWB were key characteristics associated with caregiver burden. CONCLUSIONS: The caregiver burden of adolescent patients was higher than that of adult patients, and the satisfaction rate of adolescent scoliosis patients was higher than that of adult scoliosis patients. Improving the functional state of scoliosis patients and providing appropriate nursing practice education from health professionals would be necessary to effectively improve caregivers SWB and alleviate caregiver burden. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40359-023-01375-0.