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Abstract(s)
A Esclerose Múltipla (EM) enquanto doença crónica incapacitante e de curso incerto, tem
um impacto negativo profundo na Qualidade de Vida (QoL). Atualmente, a avaliação da
QoL na EM é de elevada importância em diversos contextos clínicos e de investigação,
contudo a utilização de instrumentos genéricos de avaliação da QoL não permite a
compreensão mais completa e direcionada à realidade dos doentes com EM. Realizou-se
uma revisão sistemática da literatura (RSL), com o objetivo de identificar os instrumentos
de avaliação específicos da QoL em pacientes com EM, por se considerarem como
fundamentais na captura das nuances e desafios únicos enfrentados por estes pacientes.
Nesta RSL, a pesquisa foi realizada nas bases de dados Pubmed, Cochrane, EBSCO e B-on.
A pesquisa foi restrita a artigos escritos em inglês, espanhol e português, e publicados
entre maio de 2018 e maio de 2023. A data da última pesquisa foi a 19 de novembro de
2023. Foram incluídos estudos que abordassem instrumentos de avaliação da qualidade
de vida aplicados a doentes com diagnóstico confirmado de EM. Da pesquisa nas bases de
dados, e após exclusão de artigos duplicados, foram obtidos 1410 registos. Após leitura do
título e resumo, foram excluídos 1038 artigos. Após recuperação integral dos artigos
(n=372) e avaliação para elegibilidade (n=341), foram submetidos 56 artigos para
avaliação da qualidade através da ferramenta baseada de Hawker et al, sendo incluídos 56
artigos no estudo. Os artigos eram de diferentes países, com múltiplas metodologias e
outcomes. A maioria das amostras eram compostas por participantes do sexo feminino,
com EM recorrente-remitente. No que concerne aos instrumentos de avaliação da QoL em
doentes com EM, o MSIS-29 é o instrumento mencionado com maior frequência (n=22),
seguido do MusiQoL (n=18), MSQoL-54 (n=11), SF-36 (n=4), EQ-VAS (n=3), EQ-5D-5L
(n=2), FAMS (n=2), LMSQOL (n=2), EQ-5D-3L (n=1), MSQLI (n=1) e HAQUAMS (n=1).
Entre os instrumentos identificados, destaca-se uma presença transversal dos domínios:
mobilidade (n=9) e humor (n=9), seguidos de fadiga (n=8), função social (n=8), dor (n=8)
e autocuidados (n=7), existindo uma certa tendência para os itens estarem relacionados à componente física da doença, o que se traduz numa valorização desta no score final da
QoL. A realização desta RSL, evidencia a complexidade de avaliar a QoL na vivência da
EM, existindo, pelo menos à luz da pesquisa realizada, onze instrumentos para a sua
avaliação. Dos estudos identificados, não existe uma razão bem delimitada pelos autores
para o uso de determinado instrumento específico, em primazia de outro, existindo apenas
a premissa que instrumentos genéricos não são capazes de serem usados isoladamente
para avaliar QoL nos doentes com EM. Para a investigação futura, existe a necessidade
premente em reunir um corpo de peritos a nível mundial para construir um instrumento
gold standard, com visão holística e personalizada à EM, com aplicabilidade transversal,
de modo a ser possível a obtenção de resultados facilmente comparáveis, interpretados, e
comunicáveis entre investigadores e profissionais de saúde em todo o mundo.
Multiple Sclerosis (MS), as a chronic and disabling disease with an uncertain course, has a profound negative impact on Quality of Life (QoL). Currently, assessing QoL in MS holds high importance in various clinical and research contexts; however, the use of generic QoL assessment tools does not allow a more comprehensive and targeted understanding of the reality faced by patients with MS. A systematic literature review (SLR) was conducted with the aim of identifying specific QoL assessment instruments for MS patients, as they are considered crucial for capturing the nuances and unique challenges faced by these patients. In this SLR, searches were conducted on the Pubmed, Cochrane, EBSCO, and B-on databases. The search was restricted to articles written in English, Spanish, and Portuguese, published between May 2018 and May 2023, with the last search conducted on November 19, 2023. Studies addressing QoL assessment instruments applied to patients with a confirmed diagnosis of MS were included. From the database searches, 1410 records were obtained after excluding duplicate articles. After reviewing titles and abstracts, 1038 articles were excluded. Following a full-text review (n=372) and eligibility assessment (n=341), 56 articles were submitted for quality assessment using the tool developed by Hawker et al., with all 56 articles included in the study. The articles originated from different countries, employing diverse methodologies and outcomes. The majority of samples consisted of female participants with relapsing-remitting MS. Regarding QoL assessment instruments in MS patients, the MSIS-29 was the most frequently mentioned instrument (n=22), followed by MusiQoL (n=18), MSQoL-54 (n=11), SF-36 (n=4), EQ-VAS (n=3), EQ-5D-5L (n=2), FAMS (n=2), LMSQOL (n=2), EQ-5D-3L (n=1), MSQLI (n=1), and HAQUAMS (n=1). Among the identified instruments, there was a cross-cutting presence of domains: mobility (n=9) and mood (n=9), followed by fatigue (n=8), social function (n=8), pain (n=8), and self-care (n=7), with a certain trend for items to be related to the physical component of the disease, translating into its emphasis in the final QoL score. The completion of this SLR highlights the complexity of assessing QoL in the experience of MS, revealing at least eleven instruments for its evaluation in light of the conducted research. Among the identified studies, authors did not provide a well-defined rationale for the use of a specific instrument over another, with only the premise that generic instruments are insufficient when used in isolation for assessing QoL in MS patients. For future research, there is a pressing need to assemble a global panel of experts to develop a gold standard instrument with a holistic and personalized vision for MS, ensuring transversal applicability to facilitate easily comparable, interpretable, and communicable results among researchers and healthcare professionals worldwide.
Multiple Sclerosis (MS), as a chronic and disabling disease with an uncertain course, has a profound negative impact on Quality of Life (QoL). Currently, assessing QoL in MS holds high importance in various clinical and research contexts; however, the use of generic QoL assessment tools does not allow a more comprehensive and targeted understanding of the reality faced by patients with MS. A systematic literature review (SLR) was conducted with the aim of identifying specific QoL assessment instruments for MS patients, as they are considered crucial for capturing the nuances and unique challenges faced by these patients. In this SLR, searches were conducted on the Pubmed, Cochrane, EBSCO, and B-on databases. The search was restricted to articles written in English, Spanish, and Portuguese, published between May 2018 and May 2023, with the last search conducted on November 19, 2023. Studies addressing QoL assessment instruments applied to patients with a confirmed diagnosis of MS were included. From the database searches, 1410 records were obtained after excluding duplicate articles. After reviewing titles and abstracts, 1038 articles were excluded. Following a full-text review (n=372) and eligibility assessment (n=341), 56 articles were submitted for quality assessment using the tool developed by Hawker et al., with all 56 articles included in the study. The articles originated from different countries, employing diverse methodologies and outcomes. The majority of samples consisted of female participants with relapsing-remitting MS. Regarding QoL assessment instruments in MS patients, the MSIS-29 was the most frequently mentioned instrument (n=22), followed by MusiQoL (n=18), MSQoL-54 (n=11), SF-36 (n=4), EQ-VAS (n=3), EQ-5D-5L (n=2), FAMS (n=2), LMSQOL (n=2), EQ-5D-3L (n=1), MSQLI (n=1), and HAQUAMS (n=1). Among the identified instruments, there was a cross-cutting presence of domains: mobility (n=9) and mood (n=9), followed by fatigue (n=8), social function (n=8), pain (n=8), and self-care (n=7), with a certain trend for items to be related to the physical component of the disease, translating into its emphasis in the final QoL score. The completion of this SLR highlights the complexity of assessing QoL in the experience of MS, revealing at least eleven instruments for its evaluation in light of the conducted research. Among the identified studies, authors did not provide a well-defined rationale for the use of a specific instrument over another, with only the premise that generic instruments are insufficient when used in isolation for assessing QoL in MS patients. For future research, there is a pressing need to assemble a global panel of experts to develop a gold standard instrument with a holistic and personalized vision for MS, ensuring transversal applicability to facilitate easily comparable, interpretable, and communicable results among researchers and healthcare professionals worldwide.
Description
Keywords
Esclerose Múltipla Qualidade de Vida Qualidade Vida Relacionada à Saúde Revisãosistemática da Literatura