Health-related quality of life in patients with narcolepsy

Dodel, Richard; Peter, Helga; Spottke, Annika; Noelker, Carmen; Althaus, Astrid; Siebert, Uwe; Walbert, Tobias; Kesper, Karl; Becker, Heinrich F.; Mayer, Geert

doi:10.1016/j.sleep.2006.10.010

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Volume 8, Issue 7 , Pages 733-741, November 2007

Health-related quality of life in patients with narcolepsy

Richard Dodel
- Department of Neurology, Philipps-University, Marburg, Germany
- Corresponding author. Present address: Department of Neurology, Philipps University Marburg, Rudolf-Bultmannstr. 8, 35039 Marburg, Germany. Tel.: +49 6421 2866251.
Helga Peter
- Department of Neurology, Philipps-University, Marburg, Germany
Annika Spottke
- Department of Neurology, Friedrich-Wilhelms-University Bonn, Germany
Carmen Noelker
- Department of Neurology, Philipps-University, Marburg, Germany
Astrid Althaus
- Department of Neurology, Philipps-University, Marburg, Germany
Uwe Siebert
- Department of Public Health, Medical Decision Making and Health Technology Assessment, UMIT, Hall, Austria and Institute for Technology Assessment, Harvard Mediacl School, Boston, USA
Tobias Walbert
- Department of Neurology, Philipps-University, Marburg, Germany
Karl Kesper
- Department of Pneumology, Philipps-University Marburg, Germany
Heinrich F. Becker
- Department of Pneumology, Philipps-University Marburg, Germany
Geert Mayer
- Department of Neurology, Hephata Kliniken, Schwalmstadt-Treysa, Germany

Received 3 July 2006; received in revised form 20 October 2006; accepted 23 October 2006.

Abstract

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.

Keywords: Narcolepsy, Quality of life, EQ-5D, SF-36, Causing factors