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Contributory factors to caregiver burden in Parkinson’s disease : data of the PRISM study
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Contextualização: Na gestão da Doença de Parkinson (DP), os benefícios do cuidador informal são evidentes. A sobrecarga associada a esta tarefa é um problema cada vez mais reconhecido, carecendo ainda de resposta adequada.
Objectivo: Identificar os melhores fatores preditores de sobrecarga nos cuidadores de pessoas com DP.
Métodos: Analisamos a base de dados do estudo The Parkinson's Real-world Impact AsseSMent (PRISM) – um estudo europeu observacional transversal – concretizado através da aplicação de um questionário online dirigido às pessoas com DP e respetivos cuidadores. O inquérito permitiu recolher informação sobre aspetos clínicos de pessoas com DP, utilização de cuidados de saúde e cuidados complementares, burden da doença, modificações no relacionamento e sobrecarga do cuidador. A sobrecarga do cuidador foi avaliada pela Escala de Zarit (ZBI). Na análise de dados, recorremos a estatística descritiva; e, para determinar a correlação entre as variáveis associadas à pessoa com PD e ao cuidador com o index ordinal da ZBI, recorremos a regressão ordinal simples e a regressão múltipla stepwise.
Resultados: Numa amostra de 245 díades, os cuidadores reportaram sobrecarga ligeira a moderada. O modelo de regressão múltipla apresentou como seus principais fatores preditores: a perceção do cuidador acerca do impacto da DP na relação; o burden financeiro; quantidade de horas dedicadas à prestação de cuidados; idade do doente; hipersexualidade e qualidade de vida relacionada à saúde (QVRS). Em conjunto, estas variáveis explicaram 66.8% da variabilidade do index ordinal da ZBI.
Conclusões: Cuidar de uma pessoa com DP acarreta sobrecarga substancial, decorrente sobretudo de alterações na dinâmica relacional, maior investimento temporal nos cuidados, existência de burden financeiro; idade mais avançada do doente, pior QVRS e comportamentos sexuais compulsivos deste.
Background: In the management of Parkinson’s Disease (PD), the benefits of an informal caregiver are notorious. The burden associated with this role is an increasingly recognized problem, still it remains an unmet need. Objective: To identify the best predictive factors of caregivers’ burden in people caring for a person with PD. Methods: We analyzed the dataset of The Parkinson’s Real-world Impact AsseSMent (PRISM) study – a European observational study with a cross-sectional design – fieled through an online survey adressed to people with PD (PwP) and their care-partner (CP). The survey collected information about PwP clinical characteristics, use of healthcare and supportive care resources, burden of disease, relationship changes and burden of care. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). Descriptive statistics were applied; and, to determine associations between PwP- and CP-related variables with the Interpretation of ZBI score, we resorted to univariate ordinal regression and stepwise multiple regression. Results: In a cohort of 245 dyads, caregivers reported a mild to moderate burden. Carers’ perception of PD impact in partnership, financial burden, hours of care, patient’s age, hypersexuality and health-related quality of life (HRQoL) were found to be significant predictors of caregiver burden. Taken together these variables explained 66.8% of the variance in the Interpretation of the ZBI score. Conclusions: Caring for a person with PD entails substantial burden, particularly when the carer perceives greater changes in partnership dynamics, dedicates more time to caregiving tasks, has financial burden; and when the patient is older, reports worst HRQoL and has sexual compulsive urges.
Background: In the management of Parkinson’s Disease (PD), the benefits of an informal caregiver are notorious. The burden associated with this role is an increasingly recognized problem, still it remains an unmet need. Objective: To identify the best predictive factors of caregivers’ burden in people caring for a person with PD. Methods: We analyzed the dataset of The Parkinson’s Real-world Impact AsseSMent (PRISM) study – a European observational study with a cross-sectional design – fieled through an online survey adressed to people with PD (PwP) and their care-partner (CP). The survey collected information about PwP clinical characteristics, use of healthcare and supportive care resources, burden of disease, relationship changes and burden of care. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). Descriptive statistics were applied; and, to determine associations between PwP- and CP-related variables with the Interpretation of ZBI score, we resorted to univariate ordinal regression and stepwise multiple regression. Results: In a cohort of 245 dyads, caregivers reported a mild to moderate burden. Carers’ perception of PD impact in partnership, financial burden, hours of care, patient’s age, hypersexuality and health-related quality of life (HRQoL) were found to be significant predictors of caregiver burden. Taken together these variables explained 66.8% of the variance in the Interpretation of the ZBI score. Conclusions: Caring for a person with PD entails substantial burden, particularly when the carer perceives greater changes in partnership dynamics, dedicates more time to caregiving tasks, has financial burden; and when the patient is older, reports worst HRQoL and has sexual compulsive urges.
Descrição
Trabalho Final do Curso de Mestrado Integrado em Medicina, Faculdade de Medicina, Universidade de Lisboa, 2023
Palavras-chave
Cuidador Sobrecarga do cuidador Doença de Parkinson Qualidade de vida Relacionamento