Depression, negative social stigma, and dissatisfaction with current clinical care can have an impact on health-related quality of life (HRQoL) in patients with narcolepsy, study results published in Behavioral Sleep Medicine suggest.
An online recruitment approach enrolled a total of 29 adults (age, 31.07±7.97 years) with an established diagnosis of type 1 or type 2 narcolepsy and elevated symptoms of depression (total score ≥10 on the Patient Health Questionnaire-9 [PHQ-9]). A live videoconferencing platform was used to conduct focus group interviews, which were completed by all participants (mean, 2.9 participants per group).
In addition, study participants completed Patient-Reported Outcomes Measurement Information System (PROMIS) measures, which included depression, anxiety, fatigue, sleep disturbance, sleep-related impairment, pain interference, and physical function. The PROMIS measures were assessed using computer adaptive tests. The Epworth Sleepiness Scale and Short-Form 36 were also completed to assess participants’ ability to fall asleep in 8 common situations and HRQoL, respectively.
The constancy of sleepiness, unpredictability of narcolepsy symptoms, and negative public perception of narcolepsy had an impact on HRQoL, according to a thematic analysis of qualitative data. In addition, participants reported that dissatisfaction with non-sleep specialists’ lack of understanding regarding narcolepsy, costs associated with care, and unpredictability of symptoms were common challenges to accessibility and/or care quality.