Canadian epilepsy priority-setting partnership: Toward a new national research agenda.
Epilepsy Behav
; 130: 108673, 2022 05.
Artigo
em Inglês
| MEDLINE | ID: covidwho-2061987
ABSTRACT
BACKGROUND:
Health research agendas are often set by researchers or by industry and may not reflect the needs and priorities of end users. This priority-setting partnership (PSP) for epilepsy was undertaken to identify the most pressing unanswered questions about epilepsy and seizures from the perspective of people with epilepsy (PWE) and their care providers.METHODS:
Using the methodology developed by the James Lind Alliance (JLA), evidence uncertainties were gathered via online surveys from stakeholders across Canada. Submissions were formed into summary questions and checked against existing evidence to determine if they were true uncertainties. Verified uncertainties were then ranked by patients, caregivers, and healthcare providers and a final workshop was held to reach a consensus on the top 10 priorities.RESULTS:
The final top 10 list reflects the priority areas of focus for research as identified by the Canadian epilepsy community, including genetic markers for diagnosis and treatment, concerns about living with the long-term effects of epilepsy, and addressing knowledge gaps in etiology and treatment approaches.CONCLUSION:
This project represents the first systematic evidence of patient- and clinician-centered research priorities for epilepsy. The results of this priority-setting exercise provide an opportunity for researchers and funding agencies to align their agendas with the values and needs of the epilepsy community in order to improve clinical outcomes and quality of life (QOL) for PWE.Palavras-chave
Texto completo:
Disponível
Coleções:
Bases de dados internacionais
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Epilepsia
Tipo de estudo:
Estudo diagnóstico
/
Estudo de etiologia
/
Estudo observacional
/
Estudo prognóstico
/
Pesquisa qualitativa
/
Ensaios controlados aleatorizados
/
Revisão sistemática/Meta-análise
Tópicos:
Covid persistente
Limite:
Humanos
País/Região como assunto:
América do Norte
Idioma:
Inglês
Revista:
Epilepsy Behav
Assunto da revista:
Ciências do Comportamento
/
Neurologia
Ano de publicação:
2022
Tipo de documento:
Artigo
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