Prospective longitudinal observational registry study of all patients with sleep disorders treated in the Mainz Comprehensive Epilepsy and Sleep Medicine Center with the focus on the course of the disease and quality of life.
Clinical parameters of patients, such as onset of the disease, prior medication, disease severity, which are important for the data analysis also collected retrospectively before the initiation of the registry. Data on the quality of life is collected only prospectively
Study Type
OBSERVATIONAL
Enrollment
500
no interventions, only observation
Mainz Comprehensive Epilepsy and Sleep Medicine Center
Mainz, Rhineland-Palatinate, Germany
RECRUITINGExcessive daytime sleepiness (EDS) as measure by Epworth Sleepiness Scale (ESS) after 3 months (rating from 0 (no sleepiness) to 24 (severe sleepiness))
EDS measure by ESS at the follow-up after 3 months
Time frame: 3 months
European Quality of Life 5 dimensions Index (EQ 5D Index)
health-related quality of life measured by EQ5D-Index (European Quality of Life 5 dimensions), rating from 0 (worst possible state) to 1 (best possible state)
Time frame: 3 months
Excessive daytime sleepiness (EDS) as measure by Epworth Sleepiness Scale (ESS) after 6 months
EDS measure by ESS at the follow-up after 6 months (rating from 0 (no sleepiness) to 24 (severe sleepiness))
Time frame: 6 months
European Quality of Life 5 dimensions Index (EQ 5D Index)
health-related quality of life measured by EQ5D-Index (European Quality of Life 5 dimensions), rating from 0 (worst possible state) to 1 (best possible state)
Time frame: 6 months
Multidimensional Fatigue Inventory
Multidimensional Fatigue Inventory: 20-item self-report instrument designed to measure fatigue. Measures range from 0-100, representing more severe fatigue at higher scores
Time frame: 3 months
Multidimensional Fatigue Inventory
Multidimensional Fatigue Inventory: 20-item self-report instrument designed to measure fatigue. Measures range from 0-100, representing more severe fatigue at higher scores
Time frame: 6 months
Beck Depression Inventory II
Beck Depression Inventory II: higher scores correspond to more severe depression (range 0-63)
Time frame: 6 months
Beck Depression Inventory II
Beck Depression Inventory II: higher scores correspond to more severe depression (range
Time frame: 12 months
Resilience Scale 13
Resilience Scale 13 (short version with 13 questions): 13-66 points correspond with low resilience, 67-72 with moderate and 73-91 with high resilience
Time frame: 6 months
Resilience Scale 13
Resilience Scale 13 (short version with 13 questions): 13-66 points correspond with low
Time frame: 12 months
European Quality of Life visual analogue scale (EQ-VAS)
European Quality of Life visual analogue scale (EQ-VAS) (ranges from 0 to 100, where 0 is the worst anf 100 the best state)
Time frame: 6 months
European Quality of Life visual analogue scale (EQ-VAS)
European Quality of Life visual analogue scale (EQ-VAS) (ranges from 0 to 100, where 0 is the worst anf 100 the best state)
Time frame: 12 months
Ullanlinna Narcolepsy Scale (UNS)
scale to identify the burden of narcolepsy
Time frame: 3 months
Ullanlinna Narcolepsy Scale (UNS)
scale to identify the burden of narcolepsy
Time frame: 6 months
World Health Organization Quality of Life-BREF (WHOQOL-BREF)
World Health Organization Quality of Life-BREF (WHOQOL-BREF), a scale to assess overall quality of life with a range 0-100 (higher scores correspond better quality of life)
Time frame: 6 months
World Health Organization Quality of Life-BREF (WHOQOL-BREF)
World Health Organization Quality of Life-BREF (WHOQOL-BREF), a scale to assess overall quality of life with a range 0-100 (higher scores correspond better quality of life)
Time frame: 12 months
Pittsburgh Sleep Quality Index
Pittsburgh Sleep Quality Index (PSQI) is a self-rated questionnaire which assesses sleep quality and disturbances, scoring between 0 and 21 with higher scores corresponding to worse sleep quality
Time frame: 6 months
Pittsburgh Sleep Quality Index
Pittsburgh Sleep Quality Index (PSQI) is a self-rated questionnaire which assesses sleep quality and disturbances, scoring between 0 and 21 with higher scores corresponding to worse sleep quality
Time frame: 12 months
Berlin Social Support Scales (BSSS)
Berlin Social Support Scales (BSSS) is used to assess the amount of emotional, informational and instrumental support received by patients: Total scores ranged from 15 to 60, higher scores identify better support
Time frame: 6 months
Berlin Social Support Scales (BSSS)
Berlin Social Support Scales (BSSS) is used to assess the amount of emotional, informational and instrumental support received by patients: Total scores ranged from 15 to 60, higher scores identify better support
Time frame: 12 months
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