Do current patient care practices adequately address the psychosocial needs of patients with narcolepsy?

Previous work in Dr. Ong’s lab has revealed that people with narcolepsy report high levels of psychosocial distress, including symptoms of depression and anxiety (see Neikrug, Crawford, & Ong, 2017). Furthermore, our paper revealed that people with narcolepsy have a strong interest in behavioral sleep medicine (BSM) services, such as learning coping skills for chronic sleepiness, behavioral strategies to optimize daytime and nighttime sleep, and ways to increase social support. We have submitted an NIH grant (PI: Jason Ong) that aims to systematically develop and test a formal BSM intervention with these components. Although there was enthusiasm for the concept, we have not been successful in obtaining funding after three submissions. One of the major critiques raised by the NIH reviewers is that it remains unclear if the psychosocial needs of people with narcolepsy can be adequately addressed by current treatments. Although we have anecdotal reports from patients that current treatments are insufficient, we were unable to find any published studies that have provided data on this issue. Therefore, the purpose of this proposed project is to examine the research question, “Do current patient care practices adequately address the psychosocial needs of patients with narcolepsy?” To answer this question, we propose to conduct a qualitative study using focus groups and interviews consisting of patients with narcolepsy and clinicians who treat narcolepsy. We plan to recruit 30 people with narcolepsy who also endorse clinically significant symptoms of depression (as indicated by a score > 14 on the Beck Depression Inventory). Focus groups will be conducted to capture patient perspectives on their current treatments using an on-line program with 6 to 8 participants at a time. Conducting these groups online using a platform such as BlueJeans will allow us the freedom to recruit participants without geographic limitations. Participants can also take part in the study without having to worry about travel time or costs, thus enhancing the breadth of our sample. The focus groups will last for approximately 60 to 90 minutes, and will be guided by a series of semi-structured questions as delivered by a trained facilitator. The sessions will be recorded and the participant responses will be coded for thematic analysis, a common analytic strategy for qualitative data. This qualitative analysis will identify general themes about the patient experience regarding their psychosocial care and their treatment preferences. In addition to the qualitative data, quantitative data will also be collected in the form of standardized questionnaires measuring participants’ psychosocial functioning (e.g., NIH PROMIS, quality of life measures, CES-D). This quantitative information will enable us to compare the psychosocial needs of people with narcolepsy to previous studies on narcolepsy and to other populations. In addition to the patient focus groups, we also plan to interview 10 sleep specialists (either using the same online platform or in-person) regarding their perspectives on addressing the psychosocial needs of patients with narcolepsy. The purpose of this professional focus group is to gather qualitative data on how sleep physicians currently address the psychosocial needs of their patients (e.g., refer to mental health provider, treat in-house) and also to get their perspectives on the strengths and limitations of current treatments and any opportunities for improvement. Our hypothesis is that the thematic analysis will reveal at least on