Impact of selective dorsal rhizotomy to cerebral palsy children caregivers’ burden

• Published in: Child's nervous system 2024-05, Vol.40 (5), p.1461-1469
• Main Authors: Assumpcao de Monaco, Bernardo, Alves Du Rocher Candido, Alessandra, Jacobsen Teixeira, Manoel, Lopes Alho, Eduardo Joaquim
• Format: Article
• Language: English
• Subjects: Brazil; Caregivers; Cerebral Palsy - surgery; Child; Humans; Medicine; Medicine & Public Health; Muscle Spasticity - surgery; Neurosciences; Neurosurgery; Quality of Life; Rhizotomy; Treatment Outcome
• ISSN: 0256-7040; 1433-0350
• DOI: 10.1007/s00381-024-06291-1

Purpose It is known that cerebral palsy (CP) children’s caregivers suffer from burden, depression, and stress, impairing their quality of life (QoL). The more severe the CP, the more burden the caregiver has. Psychosocial support, education, therapies, and financial support are inversely related to the level of stress of the caregiver. Most parents of CP patients submitted to selective dorsal rhizotomy (SDR) report improvement not just on spasticity, but also in the functional role of the children, what can impact on caregiver’s QoL. Our objective was to evaluate the burden of CP children’s caregivers with and without previous SDR. Methods Spastic CP children caregivers were divided into two groups: those who take care of children without previous SDR (control group) and those that children were previously submitted to SDR (surgical group). The burden index was compared between groups using Burden Interview Questionnaire (BIQ). For statistical analysis, we used SPSS. Results The control group had enrolled 31 participants and the surgical group 36. The mean GMFCS level on the control and surgical groups was 3.94 ± 1.26 and 3.74 ± 1.12 ( p  = 0.61), respectively. The surgical group caregivers presented less burden related to the feeling that they should be doing more to their child ( p  = 0.003) and if they could do a better job in caring ( p  = 0.032), compared to controls. The total BIQ index was not significantly different between groups (surgical 32.14 ± 12.34 vs. control 36.77 ± 12.77; p  = 0.87). Low economic status had a weak correlation to a higher BIQ index ( R 2  = 0.24). After age-matching, there was a significative higher BIQ index in the control group ( p  = 0.008). Conclusion Caregivers of spastic CP children who were previously submitted to SDR presented less burden related to feeling of the amount of given care than those without previous surgery. The impression that they could do a better job with their kids was higher in the control group. The severity of CP and low economic status were related to more burden in both groups. After pairing groups by age, the control group had a significative higher BIQ index compared to the SDR group. Clinical trial registration Trial registration number: CAAE 73407317.6.0000.0068 (Ethical and Research Committee of University of Sao Paulo, Sao Paulo, Brazil, approved on 08/06/2021). All the subjects were freely given an informed consent to participate in the study that was obtained from all participants. Non