Considerations for Professionals

Guide to the Design of Survey Studies Involving Participants Who Have Idiopathic Hypersomnia (IH)

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.

  1. Use PWIH-friendly communication formats: succinct wording, banners, bullets, checklists, more line spacing, and bold font or highlights/shading for the most salient information. Visually and verbally simplifying communications can make it easier for PWIH to focus on the important details and understand instructions, despite brain fog and other cognitive difficulties.
  2. State Upfront Which Information Will Be Needed. Let PWIH know in advance if certain information would be helpful to have on hand before beginning the survey (e.g., medical test results, names of prescriptions/medications/supplements and dosage, etc.), thus avoiding the participant having to stop to find information. Given the cognitive difficulties many PWIH experience, including reduced focus and attention, researchers are more likely to obtain survey completion by providing this information in advance.
  3. Provide Time Estimates for Survey Sections, and Allow Piecemeal Completion, When Possible. PWIH often have fluctuating and unpredictable cognition; if the survey takes an hour and they can only manage 15-minute increments, they need to be able to “save and return” to their responses. A survey design without this piecemeal completion can be inappropriate for PWIH and result in compromised accuracy of responses and reduced respondent recruitment/retention.
  4. Allow Difficult Questions to Be Skipped and Readdressed. Some questions may be challenging for PWIH to answer immediately, because of their cognitive deficits. Therefore, it can be very helpful to provide a mechanism for them to move on to the next question and readdress skipped questions at the end.
  5. Be Specific About Timeframes. For example, if there is a question about napping, it is very important that the question clearly indicates whether it refers to napping before receiving a diagnosis and starting medications, or after.
  6. Try to Limit the Length of the Survey. The length of the survey matters – if it is too long, it is easy for PWIH to become too fatigued/sleepy and/or overwhelmed to properly respond to and complete it.
  7. Consider Grouping the Questions Into Manageable Blocks. It is important that the survey is divided into manageable amounts of questions and the questions be grouped by related content to help PWIH stay focused. What works for many is 10 questions to a block (if single-line questions) or 5 questions to a block if the questions are longer than a single line.
  8. Strive to Provide Flexibility in Survey Design. Be aware when designing a survey for people who have PWIH that unpredictability of symptoms is common in this condition. Consequently, flexibility is very important in two ways:
    1. How and when a survey is completed; and,
    2. Having questions that 1) allow for more complete descriptions and 2) are not “all or nothing” in design (such as “Yes” or “No” or a choice between “a., b., c., or d.”). This may be quite a challenge, depending on a number of factors. To address that need in a survey, it would be helpful to 1) include the option of “Other” followed by “Comment:” or “Explain:” at the end of each section of questions throughout the survey; and 2) include a free text field for “Comments” at the end of the survey.
  9. Communicate Study Results whenever possible. It can be very validating to PWIH and patient advocacy groups to be informed of the results of studies in which PWIH participated and provided layperson research summaries. It also is validating to be informed that these results are being communicated to the scientific community. When presenting research posters, consider specific, easy-to-read formatting, with a goal to efficiently and effectively communicate the results.1

* 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.

  1. NEJM Journal Watch: The Problem with Research Posters—and a Bold Approach to Fixing Them

The contents of this website, including text, graphics and other material, are for informational purposes only. This website is not intended to be a substitute for professional legal or medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Always consult your own attorney or other legal advisor with any legal questions you may have. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisors, products, procedures, opinions or other information referenced on this website. Reliance on any information on this website is solely at your own risk.

The Hypersomnia Foundation makes no representations or warranties about the satisfaction of any government regulations requiring disclosure of information on prescription drug products. In no event shall The Hypersomnia Foundation be liable for any damages (including without limitation incidental and consequential damages) or costs (including without limitation attorney’s fees) based on any claim arising from the use of this website and/or its content.