Burden and social context of caregivers of children and adolescents with Charcot-Marie-Tooth disease

Abstract In pediatric Charcot-Marie-Tooth (CMT) disease, caregivers play an important role in coordinating care and promoting child well-being. Therefore, understanding caregiver burden and social context is key for treatment planning. To investigate caregiver burden, family income, and level of schooling among caregivers of children and adolescents with CMT disease, and to examine correlations between caregiver burden, patient age, clinical impairment, and caregiver age. A cross-sectional study was conducted with 58 patients (aged 3–18 years) and their primary caregivers. Caregiver profile and burden were obtained through interview. The Caregiver Burden Scale (CBS) assessed burden, and the Brazilian version of the Charcot-Marie-Tooth Pediatric Scale (CMTPedS-Br) assessed patient's clinical impairment. The median age of children and adolescents was of 13.0 (11.0–15.0) years, and that of caregivers was of 41.0 (36.5–46.0) years. Median scores were 22.5 (18.0–27.0) for CMTPedS-Br and 31.5 (25.2–44.8) for CBS. Most caregivers were mothers (85.2%), did not present a CMT diagnosis (59.6%), earned R$ 2,200 to 4,400 per month (42.6%), and completed high school (33.3%). Burden did not differ by income or level of schooling and showed a weak positive correlation (p = 0.17) with caregiver age only. Caregivers of children and adolescents with CMT disease and moderate impairment may experience burden. Although socioeconomic factors were not decisive in explaining differences in caregiver burden, their variability highlights the need to consider them in care planning. Caregiver burden is a complex construct that may involve additional factors not included in the present study. Overall, findings support multidisciplinary, caregiver-centered interventions in pediatric CMT disease care.