Impairment in Functioning and Quality of Life in Patients with Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study (ARISE)

Figures & data

Figure 1 Participant disposition. The bolded text indicates the number and percentage of eligible participants who completed the survey and were analyzed.

Notes: ^aHypersomnia Foundation, n=59; inVibe, n=16. ^bLong sleep was defined as ≥11 hours of sleep in a 24-hour period (self-reported). ^cMost terminations during screening were because potential participants had obstructive sleep apnea (n=26), narcolepsy (n=12), no idiopathic hypersomnia (n=116), or slept <7 hours a night (n=47).

Abbreviation: LST, long sleep time.

Table 1 Demographics and Participant Characteristics

	All Participants (N=75)	Participants With LST^a (n=37)	Participants Without LST^a (n=38)
Age, years, mean (SD)	34.1 (10.7)	33.7 (10.7)	34.4 (10.9)
Female, n (%)	61 (81.3)	27 (73.0)	34 (89.5)
Time since idiopathic hypersomnia diagnosis, years, n (%)
<2	12 (16.0)	5 (13.5)	7 (18.4)
2–4	34 (45.3)	20 (54.1)	14 (36.8)
5–9	18 (24.0)	8 (21.6)	10 (26.3)
≥10	11 (14.7)	4 (10.8)	7 (18.4)
Patient-reported sleep duration, mean (SD)
Approximate hours of sleep in a typical 24-hour period	11.6 (3.4)	14.3 (2.7)	8.9 (1.1)
Approximate hours of sleep in a typical night	8.9 (1.6)	9.8 (1.7)	8.0 (0.8)
Approximate hours of sleep in a typical day	2.7 (2.8)	4.5 (2.9)	0.9 (1.0)
Participants who took off-label medications for idiopathic hypersomnia, n (%)	67 (89.3)	36 (97.3)	31 (81.6)
Current comorbidity (≥5%)^b n (%)
Any psychiatric disorder^c	33 (44.0)	16 (43.2)	17 (44.7)
Anxiety	26 (34.7)	13 (35.1)	13 (34.2)
Major depressive disorder	9 (12.0)	2 (5.4)	7 (18.4)
Bipolar disorder or any psychotic disorder	6 (8.0)	5 (13.5)	1 (2.6)
Hypothyroidism	6 (8.0)	4 (10.8)	2 (5.3)
PTSD	5 (6.7)	3 (8.1)	2 (5.3)
Restless legs syndrome	5 (6.7)	3 (8.1)	2 (5.3)
Other disorder that may be associated with excessive daytime sleepiness or fatigue^d	5 (6.7)	1 (2.7)	4 (10.5)
Anxiety and PTSD	4 (5.3)	3 (8.1)	1 (2.6)

Notes: ^aLong sleep was defined as ≥11 hours of sleep in a 24-hour period (self-reported). ^bAll comorbidities were self-reported. A participant could have had ≥1 comorbidity. Only comorbidities reported by ≥5% of participants are listed. ^cThese included anxiety, major depressive disorder, bipolar disorder, or any other psychotic disorders. ^dThese included 1 person each who had depression; mild depression, possible attention-deficit disorder (but could be sleep disorder); persistent depressive disorder; small fiber neuropathy; and inflammatory bowel disease.

Abbreviations: LST, long sleep time; PTSD, post-traumatic stress disorder; SD, standard deviation.

Figure 2 FOSQ-10 scores. The bottom and top edges of the box indicate the first and third quartiles, the line inside the box is the median, and the marker inside the box is the mean. The whiskers extending from the box indicate the minimum and maximum values.

Notes: ^aRange of scores is 5–20; lower scores indicate worse impairment. ^bThe mean (SD) published normative value (ie, in individuals who do not experience sleepiness-related impairment), as reported in a prior clinical study.^16cLong sleep was defined as ≥11 hours of sleep in a 24-hour period (self-reported).

Abbreviations: FOSQ-10, Functional Outcomes of Sleep Questionnaire, short version; LST, long sleep time; Max, maximum; Min, minimum; Q1, first quartile; Q3, third quartile; SD, standard deviation.

Figure 3 Neuro-QoL short form scores in Social Roles^a (A) and Stigma^b (B) domains. The bottom and top edges of the box indicate the first and third quartiles, the line inside the box is the median, and the marker inside the box is the mean. The whiskers extending from the box indicate the minimum and maximum values.

Notes: ^aAbility to participate in social roles and activities. Raw scores were converted into T-scores (mean, 50; SD, 10) for comparison with the mean score from a general reference population, as published in the Neuro-QoL User Manual. Range of possible T-scores is 24.1–60.2; higher scores indicate better outcomes.^17bPerceptions of self and publicly enacted negativity, prejudice, and discrimination as a result of disease-related manifestations. Raw scores were converted into T-scores (mean, 50; SD, 10) for comparison with the mean score from a clinical reference population, as published in the Neuro-QoL User Manual. Range of possible T-scores is 39.2–81.5; higher scores indicate worse outcomes.^17cLong sleep was defined as ≥11 hours of sleep in a 24-hour period (self-reported).

Abbreviations: LST, long sleep time; Max, maximum; Min, minimum; Neuro-QoL, Quality of Life in Neurological Disorders; Q1, first quartile; Q3, third quartile; SD, standard deviation.

Table 2 BC-CCI and PHQ-9 Scores

	All Participants (N=75)	Participants With LST^a (n=37)	Participants Without LST^a (n=38)
BC-CCI total score
Mean (SD)	10.8 (4.8)	11.6 (4.9)	10.1 (4.6)
Median	12.0	13.0	10.5
Min, Max	2, 18	2, 18	2, 18
BC-CCI score categories, n (%)
Broadly normal cognition (0–4)	11 (14.7)	5 (13.5)	6 (15.8)
Mild cognitive complaints (5–8)	17 (22.7)	7 (18.9)	10 (26.3)
Moderate cognitive complaints (9–14)	27 (36.0)	12 (32.4)	15 (39.5)
Severe cognitive complaints (15–18)	20 (26.7)	13 (35.1)	7 (18.4)
PHQ-9 total score
Mean (SD)	12.3 (5.4)	14.1 (5.2)	10.6 (5.1)
Median	12.0	14.0	10.0
Min, Max	2, 26	5, 26	2, 25
PHQ-9 score categories (severity of depressive symptoms), n (%)
Minimal (<5)	2 (2.7)	0 (0.0)	2 (5.3)
Mild (5–9)	23 (30.7)	8 (21.6)	15 (39.5)
Moderate (10–14)	24 (32.0)	11 (29.7)	13 (34.2)
Moderately severe (15–19)	19 (25.3)	13 (35.1)	6 (15.8)
Severe (20–27)	7 (9.3)	5 (13.5)	2 (5.3)

Notes: ^aLong sleep was defined as ≥11 hours of sleep in a 24-hour period (self-reported).

Abbreviations: BC-CCI, British Columbia Cognitive Complaints Inventory; LST, long sleep time; Max, maximum; Min, minimum; PHQ-9, Patient Health Questionnaire-9; SD, standard deviation.

Figure 4 WPAI:SHP scores^a in all participants. The bottom and top edges of the box indicate the first and third quartiles, the line inside the box is the median, and the marker inside the box is the mean. The whiskers extending from the box indicate the minimum and maximum values.

Notes: ^aItems relating to absenteeism and work productivity were completed only by participants who were employed; the item relating to activity impairment was completed by all participants. ^bAbsenteeism was defined as percent work time missed due to idiopathic hypersomnia. ^cPresenteeism was defined as percent impairment while working. ^dRefers to overall daily activity, other than working.

Abbreviations: Max, maximum; Min, minimum; Q1, first quartile; Q3, third quartile; SD, standard deviation; WPAI:SHP, Work Productivity and Activity Impairment Questionnaire: Specific Health Problem.

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