Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats.

ABSTRACT:

Background

Rare disease research is hampered in part by the fact that patients are geographically dispersed. Rare disease patient communities are recognized for their use of the internet to learn about their condition and find peer-to-peer support. As such, web-based technologies offer promise for overcoming geographic barriers in rare disease research for many. Qualitative focus groups (FGs) are a widely used methodology used to understand patients and parents/families 'lived experience' and unmet needs is important to improve care for rare diseases. It is unclear if web-enabled (virtual) FGs are comparable to traditional in-person approaches. We conducted in-person (n = 3) and virtual (n = 3) FGs with rare disease patients to determine if virtual FGs produce similar results in-pe

SUBMITTER: Dwyer AA 

PROVIDER: S-EPMC9465872 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature