Geographically dispersed patients have posed significant roadblocks for rare disease research resulting in small sample sizes and underpowered studies. As rare disease patients have been referred to as internet “power users”, web-enabled technologies hold promise for reaching dispersed rare disease patients and surmounting geographic barriers for many. To our knowledge, the present study is the first to support the validity of virtual focus groups for qualitative rare disease research. Moreover, the present findings suggest the anonymity afforded by the internet can facilitate discussion of highly sensitive and intimate topics. This observation is important as feelings of stigma and shame are frequently experienced by patients living with a rare disease—particularly in a condition like CHH that has a psychosexual/sexual health component. The present findings support methodologic rigor of using web-enabled technologies for qualitative research using focus groups in rare diseases.
Thursday, September 15, 2022
Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats
Andrew A. Dwyer, Melissa Uveges, Samantha Dockray & Neil Smith; Orphanet J Rare Dis 17, 354 (2022). doi:10.1186/s13023-022-02522-3
