Quality of life of children with cerebral palsy treated with botulinum toxin: are well-being measures appropriate?

Abstract

-Aim: To analyze quality of life (QOL) of children with cerebral palsy (CP) treated with botulinum toxin type A (BTXA). Method: Two QOL evaluation tools, translated into Portuguese, were used: Pediatric Outcomes Data Collection Instrument (PODCI) and Child's Caregiver Questionnaire (CCQ). Questionnaires were answered by caregivers on two occasions. Patients were divided into 3 groups: I -patients who had been previously treated with BTXA and who underwent a session of BTXA; II -patients who used BTXA for the first time; III -patients previously treated with BTXA but did not in this interval. Results: Sixty-eight patients were evaluated. In group I (n=26) the functional ability had improvement for all types of CP (p=0.04), and tetraplegic increased interaction/communication (p=0.02). In group II (n=14) positioning improved (p=0.02). Group III (n=28) showed no change in QOL. Conclusion: PODCI and CCQ are able to capture outcome in children with CP.Key wOrDS: cerebral palsy, quality of life, questionnaires of quality of life, botulinum toxin type A. Qualidade de vida em crianças com paralisia cerebral tratadas com toxina botulínica: estas avaliações são adequadas ?Resumo -Objetivo: Analisar a qualidade de vida (QV) de crianças com paralisia cerebral tratadas com toxina botulínica do tipo A (TBA). Método: Dois instrumentos de QV, adaptados para a língua portuguesa, foram utilizados: Instrumento para Avaliação de resultados de reabilitação em Pediatria (IArrP) e Questionário do Cuidador da Criança (CQC), sendo respondidos pelos cuidadores. Os pacientes foram divididos em 3 grupos: I -já haviam utilizado TBA e foram submetidos à aplicação neste intervalo; II -utilizaram TBA pela primeira vez; III -utilizaram TBA previamente, mas não neste intervalo. Resultados: Sessenta e oito pacientes foram avaliados, no grupo I (n=26) houve melhora da capacidade funcional em todos os tipos de PC (p=0.04), e tetraplégicos tiveram ganho também na interação/comunicação (p=0.02). No grupo II (n=14) houve melhora em posicionamento (p=0.02). Não foram observadas mudanças na QV do grupo III (n=28). Conclusão: IArrP e CQC são capazes de avaliar resultados em crianças com PC.PALAVrAS-ChAVe: paralisia cerebral, qualidade de vida, questionários de qualidade de vida, toxina botulínica do tipo A.

Treatment with botulinum toxin in children with cerebral palsy: a qualitative study of parents' experiences

“…That BoNT‐A can have an overall positive effect on well‐being has been described in a few studies (Assis et al . ; Love et al . ).…”

“…Two questionnaire studies have investigated the effects of BoNT‐A treatment on quality of life, with varying results (Assis et al . ; Redman et al . ).…”

“…Wright et al (2008) showed that improvements in activity and participation were related to decreased spasticity and that functional abilities were maintained at 6-months' follow-up. Two questionnaire studies have investigated the effects of BoNT-A treatment on quality of life, with varying results (Assis et al 2008;Redman et al 2008). In the study by Redman et al (2008) parents and children reported no change in health-related quality of life after treatment with BoNT-A in the upper limb, while in the study by Assis et al (2008) parents and caregivers reported improvement in the children's quality of life.…”

Validation of the Brazilian version of the pediatric outcomes data collection instrument: a cross-sectional evaluation in children and adolescents with juvenile idiopathic arthritis

“…Assis et al [27] previously validated the PODCI only in parents or caregivers in Brazil and observed the sensitivity of the PODCI for detecting changes in the health states of ill individuals. However, they did not validate this instrument for its capacity to detect QOL in a cross-sectional sample, and did not evaluate its precision.…”

“…The PODCI measures cross-sectional or longitudinal QOL in individuals which distinguishes the PODCI from other generic questionnaires [3,26,27]. The sensitivity of the PODCI to clinical changes [3] makes it a valuable instrument [28], and the sensitivity of all three PODCI versions to changes in Brazilian patients was verified.…”