The hidden burden of narcolepsy type 1: Discordance in psychobehavioral symptoms between patient self-reports and reports from close family members and friends.
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Mazza Stéphanie, Fort Emmanuel, Martel Nora, Ricordeau François, Bastuji Hélène, Arnulf Isabelle, Barateau Lucie, Bourgin Patrice, Dauvilliers Yves, Debs Rachel, Dodet Pauline, Dudoignon Benjamin, Franco Patricia, Hartley Sarah, Lambert Isabelle, Lecendreux Michel, Leclair-Visonneau Laurene, Léger Damien, Lemesle-Martin Martine, Léotard Antoine, Leu-Semenescu Smaranda, Limousin Nadège, Lopez Régis, Meslier Nicole, Micoulaud-Franchi Jean-Arthur, Charley-Mocana Christelle, d'Ortho Marie-Pia, Philip Pierre, Ruppert Elisabeth, de La Tullaye Sylvie, Brigandet Manon, Charbotel Barbara, Rolland Benjamin, Peter-Derex Laure
Аннотация
METHODS: Within the multicenter French NarcoScol-NarcoVitae cross-sectional case-control study, 174 adults with NT1 (18-58 years) and 126 age- and sex-matched non-relative controls completed the Adult Self-Report (ASR), a standardized measure of adult psychobehavioral problems. A close informant completed the parallel Adult Behavior Checklist (ABCL), yielding 97 NT1 and 96 control ASR-ABCL dyads. T-scores were computed for internalizing and externalizing scales, and the total problems score. Between-group differences (NT1 vs non-relative controls) and within-individual discrepancies between self- and informant-reported symptoms were analyzed. Narcolepsy severity (NSS), sleepiness (ESS), age at diagnosis, and a composite professional prognosis score were compared across concordant and discordant dyads.
RESULTS: Patients with NT1 reported significantly higher psychiatric symptom severity than controls across all ASR scales, with 44.8% versus 19.1% in the clinical range for internalizing difficulties. Informants generally rated patients' symptom severity as lower than patients' self-reports, particularly for internalizing symptoms. Discordant dyads in which informants rated internalizing symptoms as more severe than patients were characterized by lower NT1 symptom burden (NSS). Concordant patient-informant evaluations were associated with a more favorable professional prognosis.
CONCLUSION: Adults with NT1 report substantial psychobehavioral impairments that are not consistently identified by close informants, especially internalizing difficulties. This perception gap highlights the complementary value of patient and informant perspectives and calls for improved recognition of less visible symptoms within patients' close environment.
CLINICAL TRIALS: NCT03765892.