Objective: To obtain insight in the spectrum of narcolepsy symptoms and associated burden in a large cohort of patients. Methods: We used the Narcolepsy Monitor, a mobile app, to easily rate the presence and burden of 20 narcolepsy symptoms. Baseline measures were obtained and analyzed from 746 users aged between 18 and 75 years with a reported diagnosis of narcolepsy. Results: Median age was 33.0 years (IQR 25.0–43.0), median Ullanlinna Narcolepsy Scale 19 (IQR 14.0–26.0), 78% reported using narcolepsy pharmacotherapy. Excessive daytime sleepiness (97.2%) and lack of energy were most often present (95.0%) and most often caused a high burden (79.7% and 76.1% respectively). Cognitive symptoms (concentration 93.0%, memory 91.4%) and psychiatric symptoms (mood 76.8%, anxiety/panic 76.4%) were relatively often reported to be present and burdensome. Conversely, sleep paralysis and cataplexy were least often reported as highly bothersome. Females experienced a higher burden for anxiety/panic, memory, and lack of energy. Conclusions: This study supports the notion of an elaborate narcolepsy symptom spectrum. Each symptom’s contribution to the experienced burden varied, but lesser-known symptoms did significantly add to this as well. This emphasizes the need to not only focus treatment on the classical core symptoms of narcolepsy.

Design cards are a popular way for designers to encode and communicate design knowledge. Aiming to inform the designers of such design tools we set out to characterize the design space of design cards in a two-pronged approach involving a) a systematic literature survey on the use of design cards and b) card sorting interviews, which were carried out in order to characterize the first impressions of design cards from design students, for different formal qualities and content of design cards. Our results point towards a need to develop more abstract and evocative presentations, that are visually attractive while supporting a flexible application of cards. Future research could explore whether such preferences are consistent with how card sets are used during design processes in practice.