Objective: to assess the quality of life (QOL) of adolescents with cerebral palsy (CP) by self-report and by the caregiver’s report, and to analyze the agreement between these reports. Method: cross-sectional study conducted with 101 adolescents with CP and 101 caregivers. Both answered the Pediatric Quality of Life Inventory (PedsQL), module 4.0 - Generic (PedsQL 4.0) and module 3.0 - PC (PedsQL 3.0). Agreement between reports was analyzed using the Mann-Whitney test and the intra-class correlation coefficient (ICC) (p<0.05). Results: the lowest scores were in physical health, school activities and fatigue in the self-report. The lowest scores were in physical health and daily activities, in the caregivers’ report. Perceptions among adolescents and caregivers differed in physical health, movement and equilibrium, daily and school activities, with a lower score for caregivers in all of them. The agreement between the self-report and the caregivers’ report was poor (ICC<0.44) and in both instruments, the caregivers’ report was less optimistic. Conclusion: physical health is the most impaired domain of the QOL of adolescents with CP, both in the self-report and in the caregivers’ report. However, there is poor agreement between these reports, emphasizing that the use of the caregivers’ report should be cautious.
Objectives: to investigate the correlation between fatigue and quality of life in adolescents with cerebral palsy who are susceptible to more significant fatigue and lower quality of life. Methods: cross-sectional study conducted with 101 adolescents with cerebral palsy. Instruments such as the Pediatric Quality of Life Inventory and Gross Motor Function Classification System were used, and Kolmogorov-Smirnov, Mann-Whitney, and Spearman tests were applied. Results: older adolescents self-reported higher fatigue levels, and female adolescents, quadriplegic, with worse motor function, older, and not attending school had lower quality of life scores. Higher fatigue levels correlated with lower quality of life in all domains (p<0.01), especially in tiredness (general and mental) and functioning (social, academic, and psychosocial). Conclusions: fatigue correlated negatively with the quality of life of adolescents with cerebral palsy, showing that the higher the level of fatigue, the more compromised is the adolescents’ life.
Children with Cerebral Palsy (CP) present a permanent disturbance of posture and movement, characterized by a motor loss that causes difficulty in the execution of day-to-day activities and a consequent occupational dependence. Therefore, the task of assisting children with CP can lead to the caregivers’ tiredness, isolation, and stress, also generating a physical and emotional burden and a possible decrease in the quality of life of this population. Objective: To evaluate the burden on the primary caregivers of children with CP, comparing the quality of life and the age between caregivers with and without excessive burden, as well as to compare the economic class and work status variables to the burden variable. Method: The study was characterized as analytical and transversal. There were 31 primary caregivers of children from 0 to 18 years old with a CP diagnosis who participated in the study. The instruments utilized in the research were a socio-demographic questionnaire designed to characterize the sample, the questionnaire from the Associação Brasileira de Empresas de Pesquisa (ABEP) for economic classification, the Medical Outcome Study 36 (SF-36) for the assessment of the caregivers’ quality of life, and the Zarit Burden Interview (ZBI) to assess the caregiver’s subjective and objective burdens. Results: The results pointed out that 67.7% of the caregivers presented burden and that the averages of some domains of the SF-36 (“limitation by physical aspects”, “pain”, “vitality” and “limitation by social aspects”) for this group were significantly smaller than for the group with no burden. There was no statistically significant association in the chi-square test between the socioeconomic class of the caregivers and the burden and between the work status and the burden. Conclusion: The presence of burden on caregivers of children with CP is related to a lesser quality of life, but the burden was not associated with the caregiver’s age, work status, or economic class.
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