A new patient-reported outcome tool called FINI — the Functional Impacts of Narcolepsy Instrument — has been developed to capture the real-world burden of narcolepsy beyond excessive daytime sleepiness. The tool, introduced by Gert Jan Lammers and colleagues in Sleep, covers tiredness, cognitive functioning, cataplexy, social activities, daily tasks, and responsibilities.
Most existing narcolepsy scales focus almost exclusively on sleepiness. Yet patients consistently report that fatigue, cognitive fog, cataplexy, and the social and functional consequences of the disorder are equally disabling. FINI was designed to fill this gap.
The instrument exists in two versions: FINI-NT1 (28 items across six domains, including a dedicated Cataplexy domain) for narcolepsy type 1, and FINI-NT2 (23 items across five domains, omitting the Cataplexy items) for narcolepsy type 2. Development drew on patient experience interviews, items from the PROMIS library, and expert consensus from clinical sleep specialists and outcome scientists, with factor analysis and Rasch modeling confirming the domain structure.
The tool is intended for use across clinical settings and clinical trials to assess treatment benefit on the outcomes that matter most to patients. Psychometric validation has shown good internal consistency, convergent validity, and sensitivity to change, with meaningful within-patient change thresholds established.
The title “Veni FINI” — a play on Veni, vidi, vici — signals the authors’ conviction that the instrument is ready for clinical adoption and will help bring clearer functional assessment into narcolepsy care.
Source
Gert Jan Lammers, Denise Bijlenga, Josephine de Boer. “Veni FINI: a new tool to assess functional impact in narcolepsy.” Sleep, June 23, 2026; zsag172. DOI: 10.1093/sleep/zsag172