Subjective Assessment of Sleep and Sleepiness in Parkinson’s Disease


Scale

Type of disorder assessed

Bed partner/informant

Period assessed

Population studied

Number of questions

Range of scores (cutoff value)

Comments

PDSS-2

Nocturnal disturbance

Not required, allowed to help

Previous week

Specific for PD

15

0–60

A previous version PDSS-1 exist with several changes

PSQI

Sleep quality, both nocturnal sleep and diurnal sleepiness

Required

Previous month

Many populations, used also in PD

19, 7 components

0–21 (5)

It gives quantitative information about number of sleep hours, sleep latencies, etc. Complex scoring system

SCOPA-sleep

Sleep quality, both nocturnal sleep and diurnal sleepiness

May or may not participate

Previous month

Designed for PD

12

0–12 (5/6)

Easy to administer, appears to have selected questions from the PSQI and ESS

ESS

Daytime sleepiness

Not required

“Recent times”

General, but used in PD several times

8

0–24 (>10)

Widely used, not designed for PD but used in many studies

ISCS

Sudden onset of sleep

Not required

Not specified

PD

6

1

Good to investigate risk of unintended sleep episodes (“sleep attacks”)

SSS

Current daytime sleepiness

Not required

Current moment

General, but used in PD several times

1


Instantaneous measure of sleepiness, not appropriate for routine follow-up of patients

Stavanger

Daytime sleepiness

Required

Not specified

Specifically designed for PD

1

0–3 (2)

It is particularly useful in patients with advanced PD disease


Modified from Högl et al. [27]





5.2.2 Problems with Sleep Scales


Many sleep scales have been “validated,” a term that people automatically equals to ready for clinical use without questioning anything else. However, the fact that a sleep scale has been validated simply says that it asks about things related to sleep problems (face validity), with more or less appropriate coverage of the sleep-related problems (content validity), more or less appropriate relationship with other aspects of the disease (construct validity), and with the items composing the scale having some internal consistency [28]. These conditions, however, are apparently not very difficult to achieve and other possible scales could be made with different questions and very likely be successfully validated. Validation does not mean that all the questions of the scale have common sense or that they are all necessary. Two examples of this – the PDSS and the SCOPA-sleep scales – are illustrative.

The PSDSS-1 and PDSS-2 have both been validated and yet have important differences in their scoring system (a 10-cm visual analog scale from 0 = severe and always present to 10 = not present, vs a numeric score) as well as in the items asked (items 5, 9 and 15 of PDSS-1 are no longer present in PDSS-2 and items 4, 10 and 11 have different wording). In addition, there are items whose scores were not significantly different in patients and controls (items 2, 1, 14) and a few items are overrepresented, like items 4, 5, and 10, in which a patient with RLS will very likely answer yes three times for the same problem. A lower number of items would perhaps give similar relevant information and have similar clinimetric properties than the 15-item scale (see Table 5.2). In fact, it is unclear why the authors decided to make a 15-item scale.


Table 5.2
Frequency of nocturnal sleep complaints





































































PDSS2 (item number) ordered by frequency of positive response [8]

Score (mean ± SD) (min: 0, max: 4)

Nocturnal problems reported by patients with PD [3]

Percent (%)

Getting up at night to pass urine (item 8)

2.77 ± 1.48

Need to visit lavatory

79

Difficulties staying asleep (item 3)

2.37 ± 1.63

Inability to turn over in bed

65

“Bad sleep” quality (item 1)

1.99 ± 1.33

Painful leg cramps

55

Tired and sleepy after waking in the morning (item 14)

1.69 ± 1.62

Vivid dreams/nightmares

48

Uncomfortable/immobility at night (item 9)

1.20 ± 1.63

Cannot get out of bed unaided

35

Tremor on waking (item 13)

0.88 ± 1.38

Limb/facial dystonia

34

Difficulties falling asleep (item 2)

0.84 ± 1.41

Back pain

34

Restlessness, urge to move, pain or muscle cramps in “ARMS or LEGS” (items 4, 5, 10, 11, very similar)

(Range of means in the 4 items) 0.680.84 ± 1.3

Jerks of legs

33

Distressing dreams at night (item 6)

0.58 ± 1.13

Visual hallucinations

16

Snoring or difficulties in breathing (item 15)

0.36 ± 0.86

None

4

Distressing hallucinations at night (item 7)

0.28 ± 0.94

Told their doctors

45


Modified from Trenkwalder et al. [8], and from Lees et al. [3] from a list of complaints given by patients with PD to a postal survey at the British PD association. The complaints in the PDSS and in the list obtained from the patients have similarities but it is not the same. Remarkably, the most disturbing sleep symptom in both lists is the need to visit the lavatory at night.

The SCOPA-sleep scale is another validated scale, with repetitive questions. For instance in the NS part, a positive response to item 2 (have woken too often), item 3 (lying awake too long at night), or item 4 (have woken up too early) implies very likely a positive response to item 5 (had too little sleep at night) and the same happens in the Daytime sleepiness (DS) part where a positive answer to items 1, 2, 3, 4 implies very likely a positive answer to item 5. These repetitions will artificially increase the difference between patients and controls. Finally, the construct validity of the SCOPA-sleep was proved by showing a significant correlation with the ESS and the PSQI. However, items 2, 3, and 4 in the DS-sleep part are very similar to items 1, 2, 6 and probably 3 in the ESS, whereas items 1 and 3 of the NS-sleep part are very similar to items 5a and 5b in the PSQI. It is not rare then that SCOPA-sleep correlated well with ESS and PSQI.

Two other areas for improvement can be found. One is that in most sleep scales the questions asked have not been extracted directly from the patients’ own way of describing their complaints – that is from how the patients describe their own problems – rather from how their doctors (ESS, PDSS, SCOPA) interpret it. An extreme case is the SCOPA, where the questions were chosen from “the literature,” and the authors in fact did not see directly any of the patients or controls that participated in the study, but only the written responses to their questionnaire.

The other is that all sleep scales have assessed their construct validity by calculating the correlation between the scores on the scale with those in other scales that have addressed similar constructs, but not with objective sleep recordings. Unfortunately, the older scales – such as the ESS – had limited or controversial correlations with objective tests [1].



5.3 When to Use Sleep Scales and Which to Use?


Using scales has advantages and limitations. Advantages are the homogeneity of the questions asked, which is ideal for multicenter studies or to always record the same type of information. It may also help some patients to be aware of a sleep problem that they did not consider relevant enough to tell their doctor. Limitations are inherent to the methodology: homogeneity results in lack of flexibility in evaluating symptoms that do not perfectly fit with the questions. They may also induce an error, which is relying uniquely in a scale to diagnose or measure a sleep problem.

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May 4, 2017 | Posted by in OTOLARYNGOLOGY | Comments Off on Subjective Assessment of Sleep and Sleepiness in Parkinson’s Disease

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