Considerations for Professionals
Guide to the Design of Survey Studies Involving Participants Who Have Idiopathic Hypersomnia (IH)
Guide to the Design of Survey Studies Involving Participants Who Have Idiopathic Hypersomnia (IH)
Published February 22, 2022
Revised February 28, 2022
Vetted by Our Medical Advisory Board
Person(s) with IH (PWIH) have described facing challenges when involved in research studies that include taking surveys. This guide* was developed by the Hypersomnia Foundation to provide considerations to inform the design of the survey tool based on information about the unique characteristics of PWIH (see IH Summary and About IH). The considerations and specific examples were provided directly by PWIH in an effort to encourage participant-centered designs for survey studies, which can improve recruitment and engagement, and to optimize the quality of data collection.
* This guide was developed by the Hypersomnia Foundation and approved by its Medical Advisory Board, Board of Directors, and Patient Advisory and Advocacy Council (PAAC). It is based on suggestions from a focus group of patient-experts who have IH; the focus group was conducted in accordance with standard qualitative methods of research practice. It is important to note that the considerations presented may also apply to people who have other hypersomnias, e.g., narcolepsy type 1 (NT1), narcolepsy type 2 (NT2) and Kleine-Levin syndrome (KLS), as well as those yet-to-be-diagnosed with a hypersomnia.