Health-related quality of life and caregiving burden in pediatric clubfoot patients treated with Ponseti method in China: a cross-sectional study
摘要
Clubfoot is a common congenital foot deformity, typically managed with the standard Ponseti method. However, the impact of clubfoot on the quality of life for children and their caregivers in China remains largely unexplored. This study aimed to evaluate the HRQoL of clubfoot patients and their parental caregivers as well as their caregiving burden, while identifying key factors influencing these outcomes.
MethodsAn online survey was conducted in WeChat groups for children born with clubfoot and treated with Ponseti method. The custom questionnaire including general and clinical information of patients and their caregivers, caregiver-proxy-reported HRQoL of patients (PedsQL™ 4.0 GCM), HRQoL of caregivers (PedsQL™ 3.0 FIM) and the caregiving burden (ZBI-12) were collected. The HRQoL of patients were compared with healthy reference and the HRQoL of caregivers and ZBI were compared across different age groups. Pearson analyses were made to explore their correlation and multivariate linear regression models were used to identify their associate factors. All statistical analyses were performed using SPSS version 27.0 (p < 0.05).
ResultsA total of 180 cases were included in this study. Compared to healthy reference, PedsQL GCM showed a significant decrease in physical functioning and social functioning subscales in the 0-1 yr group but a significant increase in every scale score and total score in the 5-18yrs group. The lowest PedsQL FIM was observed in the 1-2yrs group and the highest in the 5-18yrs group. All PedsQL GCM scale scores and the total scores correlated significantly with PedsQL FIM scores in the 2-18yrs group. ZBI scores gradually increased during treatment and dropped after 5yrs. However, 54.44% of the caregivers included reported no to little burden. The factors associated with patients’ HRQoL included age and treatment-related complications, and the factors associated with caregivers’ HRQoL were PedsQL GCM, ZBI and brace adherence.
ConclusionChildren with clubfoot treated with the standard Ponseti method can achieve excellent quality of life after the early stage of treatment. Preventing treatment-related complications can improve patients’ HRQoL. Clinicians should reinforce brace adherence education during follow-ups to enhance caregivers’ HRQoL. Despite the protracted treatment, the caregiving burden is acceptable for most families. These findings can provide valuable insights for caregiver education regarding this condition.
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