Canadian healthcare capacity gaps for disease-modifying treatment in Huntington's disease: a survey of current practice and modelling of future needs.

ABSTRACT:

Objectives

Disease-modifying therapies in development for Huntington's disease (HD) may require specialised administration and additional resource capacity. We sought to understand current and future capacity for HD management in Canada considering the possible introduction of an intrathecal (IT) disease-modifying treatment (DMT).

Design, setting and participants

Using a case study, mixed methods framework, online surveys followed by semistructured interviews were conducted in late 2020 and early 2021. Neurologists from Canadian HD (n=16) and community (n=11) centres and social workers (n=16) were invited to complete online surveys assessing current HD management and potential capacity to support administration of an IT DMT.

Outcome measures

Survey responses, anticipa

SUBMITTER: Benard A 

PROVIDER: S-EPMC9161103 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature