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.
Participants were generally accepting and enthusiastic about using an online format for an intervention to improve HRQoL. Increases were observed on PROMIS measures of anxiety, depression, fatigue, and sleep impairment (T-score >60), which investigators report is consistent with previously reported levels on legacy measures. People with type 1 narcolepsy reported significantly lower general health levels compared with people with type 2 narcolepsy (P <.05).
Study limitations include the small sample size, the small number of men in the study (n=2), as well as the exclusion of participants who did not have access to online videoconferencing.
Despite these limitations, the researchers suggest that the PROMIS computer adaptive tests may “be suitable and efficient instruments for assessing HRQoL among people with narcolepsy, and should be considered for further testing in future clinical studies with this population.”
Ong JC, Fox RS, Brower RF, et al. How does narcolepsy impact health-related quality of life? A mixed-methods study [published online January 14, 2020]. Behav Sleep Med. doi:10.1080/15402002.2020.1715411