BACKGROUND: To evaluate the health-related quality of life (HRQoL) in patients suffering from narcolepsy. METHODS: Subjects included 75 narcoleptic patients diagnosed at the Hephata Klinik, Germany, who met the International Classification of Sleep Disorders (ICSD) criteria for narcolepsy. A standardized telephone interview was used to inquire about the disease and its burdens to the patients. HRQoL was recorded using the 36-item short-form Medical Outcomes Study (SF-36) as well as the Euroqol (EQ-5D). Frequency and factors of influence on decreased HRQoL were evaluated by using bivariate and multivariate analyses. RESULTS: Patients with narcolepsy had considerably lower scores on all eight domains of the SF-36 compared to the general German population. In particular, scores were poor for the dimensions "physical role", "vitality", and "general health perception". Forty-eight percent of the patients reported problems in at least one of the EQ-5D items; most frequent were problems in the dimension "usual activity" (63.8%), "pain/discomfort" (61.7%) and "anxiety/depression" (41.1%). Difficulty maintaining "self-care" was documented only by 6.8%. The mean VAS score was 60.7%. Interestingly, signs and symptoms of narcolepsy, except for irresistible sleep episodes (p<0.03), had only a minor impact on HRQoL. Multivariate analyses confirmed a strong influence of employment status, living with a partner, excessive daytime sleepiness (EDS) and professional advancement. CONCLUSIONS: HRQoL is considerably reduced in patients, with narcolepsy affecting the different dimensions to various degrees. Factors other than clinical signs and symptoms are associated also with poor HRQoL. Measures should be taken to integrate those factors into healthcare guidelines in order to improve the quality of life in patients with narcolepsy.
BACKGROUND: To evaluate the health-related quality of life (HRQoL) in patients suffering from narcolepsy. METHODS: Subjects included 75 narcolepticpatients diagnosed at the Hephata Klinik, Germany, who met the International Classification of Sleep Disorders (ICSD) criteria for narcolepsy. A standardized telephone interview was used to inquire about the disease and its burdens to the patients. HRQoL was recorded using the 36-item short-form Medical Outcomes Study (SF-36) as well as the Euroqol (EQ-5D). Frequency and factors of influence on decreased HRQoL were evaluated by using bivariate and multivariate analyses. RESULTS:Patients with narcolepsy had considerably lower scores on all eight domains of the SF-36 compared to the general German population. In particular, scores were poor for the dimensions "physical role", "vitality", and "general health perception". Forty-eight percent of the patients reported problems in at least one of the EQ-5D items; most frequent were problems in the dimension "usual activity" (63.8%), "pain/discomfort" (61.7%) and "anxiety/depression" (41.1%). Difficulty maintaining "self-care" was documented only by 6.8%. The mean VAS score was 60.7%. Interestingly, signs and symptoms of narcolepsy, except for irresistible sleep episodes (p<0.03), had only a minor impact on HRQoL. Multivariate analyses confirmed a strong influence of employment status, living with a partner, excessive daytime sleepiness (EDS) and professional advancement. CONCLUSIONS: HRQoL is considerably reduced in patients, with narcolepsy affecting the different dimensions to various degrees. Factors other than clinical signs and symptoms are associated also with poor HRQoL. Measures should be taken to integrate those factors into healthcare guidelines in order to improve the quality of life in patients with narcolepsy.
Authors: Astrid van der Heide; Mojca K M van Schie; Gert Jan Lammers; Yves Dauvilliers; Isabelle Arnulf; Geert Mayer; Claudio L Bassetti; Claire-Li Ding; Philippe Lehert; J Gert van Dijk Journal: Sleep Date: 2015-07-01 Impact factor: 5.849
Authors: Chad Ruoff; Todd J Swick; Robert Doekel; Helene A Emsellem; Neil T Feldman; Russell Rosenberg; Gary Bream; Moise A Khayrallah; Yuan Lu; Jed Black Journal: Sleep Date: 2016-07-01 Impact factor: 5.849
Authors: Alexandra Dimitrova; Rolf Fronczek; Janneke Van der Ploeg; Thomas Scammell; Shiva Gautam; Alvaro Pascual-Leone; Gert Jan Lammers Journal: J Clin Sleep Med Date: 2011-06-15 Impact factor: 4.062