Journal of Sleep Disorders: Treatment and CareISSN: 2325-9639

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Research Article, J Sleep Disor Vol: 8 Issue: 1

Measuring Pain Relief through Actigraphy in People with Intellectual Disability

Tejo Hijlkema1*, Sylvia Loos2 and Geert Jaap Welsing3

1Avans University of Applied Science, Breda, The Netherlands

2Nyx Zorg Voor Slaap, Amersfoort, The Netherlands

3University of Utrecht Utrecht, The Netherlands

*Corresponding Author: Tejo Hijlkema, MSc
Avans University of Applied Science, Breda, The Netherlands
Tel: 31642920858
E-mail: [email protected]

Received: January 02, 2019 Accepted: March 18, 2019 Published: March 29, 2019

Citation: Hijlkema T, Loos S, Welsing GJ (2019) Measuring Pain Relief through Actigraphy in People with Intellectual Disability. J Sleep Disor: Treat Care 8:1. doi: 10.4172/2325-9639.1000225


Information about reliable pain detection in people with intellectual disabilities is scarce. Pain (acute as well as chronic) has a great influence on daily activities and is often under-recognized. Chronic and acute pain also severely influences the quality and duration of sleep. Lack of sleep negatively influences chronic pain. There is no research about the influence of pain on sleep in people with Intellectual Disability. Yet we think there is a link between sleep and pain (we had no reason to assume there is no link between the two). We measured sleep in people with Intellectual Disability at an institution in the Netherlands. All the participants had pain or chronic pain or were suspected of having chronic pain. We measured sleep using actigraphy and we assessed the pain of participants with suspected pain using the Rotterdam Elderly Pain Observation Scale (REPOS) or the Checklist Pain Behavior (CPG) for children. A sleep problem was found in all the measurements and this was confirmed using the REPOS or CPG for the group with suspected chronic pain. There were 25 participants included in this research. After treatment (with analgesics for 68%) most participants experienced improved sleep. There was a significant improvement in the entire group in sleep efficiency, sleep latency, hours of sleep and/or WASO (waking after sleep onset). Although the group is small, our outcomes suggest that there is a strong relationship between chronic and acute pain and sleep in people with Intellectual Disability. Actigraphy can be used with the REPOS and the CPG to confirm suspected pain and to measure the effect of the intervention. Suspected pain can also be confirmed by actigraphy.

Keywords: Actigraphy; Intellectual disability


Nineteen percent of the general population in Europe has chronic pain. This prevalence is 18% in the Netherlands [1]. According to the International Association of the Study of Pain (IASP), pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described as such damage. Pain is always subjective [2], or physical or mental suffering. A state of localized or general discomfort which ranges from mild distress to acute agony: usually caused by injury to a part of the body or disturbance in the normal condition of a part of the body [3].

People with Intellectual Disability (ID) have a greater risk of experiencing pain than the general population [4]. Pain might be under-recognized and under-treated, especially in those who cannot communicate about their pain [5]. There is a greater risk of pain in people with ID because they have more painful conditions, such as coeliac disease [6] than controls, the prevalence of age-related painful conditions increases with the increase in life expectancy [7], and some syndromes imply a higher risk of musculosketal disorders than in the general population [4]. A significant proportion of people with ID and chronic pain experience limitations in several aspects of daily living [8]. One of the limitations is not being able to sleep properly. One of the health problems which influences the quality and duration of sleep is pain, and sleep problems in turn greatly influence pain [9-11].

Sleep is very important to our daily functioning. A lack of sleep can result in a range of health and psychiatric problems. Recent research shows that depressions could be the result of poor sleep in people who are evening types [12]. An increased risk of developing cancer also results from poor sleep. Furthermore, there is an association between sleep problems (short sleep duration) and the development of obesity in children and young adults [13]. There is also a greater risk of diabetes in people with short sleep and long sleep problems [14]. The prevalence of sleep problems in the general population in Western Europe is 31% [15]. The prevalence of sleep problems in people with ID is higher, up to 86% [16,17]. People with ID are therefore likely to have more health problems as a result of sleep problems and could have more pain complaints. We define sleep problems as problems with falling asleep and/or waking during the night, for a period of longer than one month and at least three times a week.

Is pain relief through pain treatment measurable in sleep using actigraphy?



One residential home in the central Netherlands participated in this research. Its nightshift policy was that care is only provided during the night when the residents are awake. About 900 residents live there in units of one to eight. Each unit has a psychologist and a physician responsible for the care and treatment of the residents.

This residential organization has a professional sleep team to deal with sleep problems. The team is multidisciplinary: two sleep specialists, one physician, a physiotherapist, a member of the night shift and a psychologist.

If a psychologist or physician suspected that a resident was suffering from a sleep problem, they would report this by completing a registration form. Sleep problems were suspected on the basis of the number of naps taken during the day, periods of wakefulness during the night or problems falling asleep, challenging behaviour or physical problems. Following registration one of the sleep specialists would conduct an intake interview. The following items were discussed:

• What are the complaints?

• Is there sufficient light during the day?

• Is the bedroom dark?

• Does the resident have a specific syndrome? (some syndromes have a risk of more sleep problems or there could be pain)

• Is there a suspicion that the resident has pain?

• Is there sufficient arm movement to wear an Actiwatch?

We measured a total of 200 residents. A group of 25 residents had pain or were suspected of pain or pain had not been considered as a possibility. All the participants (N=25) were included. The mean age was 46 (range 4-70). The age level of ID, any co-morbidity and the level of locomotor disability are presented along with gender in Table 1.

Participant Gender Age (Years) Level of intellectual disability Level of locomotor disability Co-morbidity Type of intervention
1 Female 23 Severe Moderate Epilepsy Haptotherapy
2 Male 63 Moderate Severe None Analgesic
3 Male 53 Profound Severe Epilepsy Laxation
4 Female 34 Profound Severe Epilepsy Analgesic
5 Female 45 Moderate Moderate None Other activities
6 Male 43 Severe None Down syndrome Laxation
7 Male 25 Severe None Autism Analgesic
8 Male 41 Profound Severe Martsolf’s syndrome Analgesic
9 Female 70 Severe Moderate Osteoporosis Analgesic
10 Male 61 Profound Severe Epilepsy Other bed
11 Female 68 Moderate Moderate Osteoarthritis Analgesic
12 Male 51 Profound Moderate Down syndrome Analgesic
13 Male 59 Profound Severe Angelman syndrome Laxation
  Male 4 Profound Severe None Analgesic
15 Female 45 Profound Moderate Epilepsy Analgesic
16 Male 50 Moderate None Autism Analgesic
17 Female 56 Severe None None Activation
18 Male 34 Profound Severe Hydrocephaly Analgesic & orthotics
19 Male 60 Severe None Gout Analgesic
20 Male 59 Profound Severe Scoliosis Analgesic
21 Male 48 Profound Severe Blind Activation
22 Female 37 Profound Severe None Analgesic
23 Female 31 Profound Severe Reflux Analgesic
24 Male 48 Profound Severe Osler-weber-rendu Analgesic
25 Male 56 Profound None Epilepsy Analgesic

Table 1: Characteristics of the participants.

Instruments and procedure

We used the Actiwatch (type AW2) manufactured by Philips for both the baseline measurement and the effect measurement. This is an objective and relatively non-invasive method of measuring restactivity patterns based on body movement. The associated software (Philips actiware 6.0.6) estimates the sleep period. The outcome measurements from the Actiwatch were: time in bed, time to get out of bed, hours in bed, hours of sleep, sleep latency (the time it takes to fall asleep) sleep efficiency (total sleep time/time in bed multiplied by 100), WASO (time awake after sleep onset). The Actiwatch is a small, lightweight wristwatch [18]. Studies have shown that the Actiwatch is a valid instrument for measuring sleep [19,20]. The epoch length was 1 minute in the current study, and the Actiwatch was worn for 14 days. Instruction was given before each measurement. The Actiwatch had an event marker which was pressed at bedtime and when getting up in the morning. One of the sleep specialists calculated the measurements and drew up a report, including advice to improve sleep. Chronic or acute pain was obvious to the daily caregivers in 15 cases, and these residents had already received pain relief medication, but only when necessary or 1000 mg paracetamol three times a day, without receiving medication for the night. If pain was suspected or the caregivers were unaware whether there was pain, a pain measurement was performed using the Rotterdam Elderly Pain Observation Scale (REPOS) [21] or in one case the Checklist Pain Behaviour (CPG), [22,23]. The REPOS is validated for acute and daily pain in non-communicative impaired elderly, but unable to express pain by self-report. It consists of ten behaviours to be scored as present (1) or absent (2). These behaviours are panicky, panic attack, moaning, groaning, sounds of restlessness, verbal expressions, breath-holding, faltering respiration, body part movement and anxious look. The CPG (Checklist Pain Behavior) is very similar to the REPOS, except that there are three items in addition: sad look, crying/sobbing and tears. The pain measurements were performed by members of the pain team. This team consists of daily caregivers trained to conduct this measurement. A REPOS observation was performed for nine of the participants and a CPG observation for one (participant 14). That participant was too young for the REPOS observation. All the participants for which a REPOS or CPG observation was performed scored above five, which indicates strongly suspected pain. After the sleep measurement and the observation or clinical observation to detect the possibility or presence of pain, the advice was discussed with the psychologist involved with the resident and with the caregiver team. A control measurement was taken after implementation of the advice.


Actigraphy was performed after the intake and a REPOS measurement was performed at the same time in 14 cases, and a CPG in one case. (T and T0). After that the psychologist and physician provided their recommendation. If reflux was suspected, a further observation was performed, and treatment followed. If reflux was not found and pain was only suspected, treatment followed. An analgesic was prescribed in most (68%) cases. In general (82%) this was paracetamol. Paracetamol is a proven painkiller for chronic or acute pain [24-26], though it is only prescribed in 18% of cases in the general population with chronic pain in Europe [1]. A NSAID was prescribed in one case.

After six to eight weeks, we performed a T1 measurement with actigraphy. We observed a positive result in one or more of the sleep parameters measured in all participants (Table 2). We observed no significant improvement in time in bed, which can be explained by the fact that the focus of this study was on only on pain and not on good sleep hygiene (Table 3).

Participant Hours of sleep T0 (h:min) Hours of sleep T1 (h:min) Sleep efficiency T0 (%) Sleep efficiency T1 (%) Sleep latency T0 (min) Sleep latency T1 (min) WASO T0 (h:min) WASO  T1 (h:min) Hours in bed T0 (min) Hours in bed T1 (min)
1 70.5 86.4 13 4 151 71 10:53 10:41 7:42 9:10
2 62.5 68.7 11 19 149 84 9:34 7:55 5:58 5:53
3 77.1 84.3 79 37 66 53 11:16 11:00 8:42 9:16
4 85.9 93.2 22 2 44 30 11:27 11:07 9:52 10:22
5 87.2 95 19 3 45 25 10:30 10:21 9:14 9:49
6 66.2 73 141 46 52 63 10:22 9:12 6:52 6:42
7 90.3 88.5 13 31 39 37 9:37 10:21 8:42 9:11
8 80.2 80.8 24 25 50 67 10:14 9:34 8:12 7:44
9 84.2 89.6 20 5 43 41 11:46 12:53 9:52 11:34
10 35.9 68.7 109 77 77 54 12:27 12:25 9:14 8:46
11 83.5 86.9 13 9 56 52 7:43 8:22 6:28 7:17
12 46.8 59.4 176 123 89 108 10:39 10:18 5:02 6:08
13 62.2 71 27 39 172 128 10:56 10:36 6:47 7:37
14 60.7 60.7 43 54 181 142 11:53 11:54 7:13 7:14
15 60.8 66.8 34 72 62 33 10:06 10:05 5:58 6:39
16 76.4 77.3 12 8 103 52 10:11 10:04 7:03 7:47
17 92.2 91.6 4 5 37 35 11:14 9:46 10:21 8:57
18 71.2 94.8 45 3 29 15 10:29 10:09 7:13 9:55
19 58.7 60.2 82 65 169 165 10:29 10:09 6:07 6:06
20 73.7 90.7 31 14 45 31 10:45 10:17 7:59 9:06
21 59.2 84.8 172 19 105 58 12:24 9:30 7:15 8:03
22 55 89.8 13 6 164 27 10:05 10:36 5:32 9:26
23 83 87.6 20 9 68 43 11:23 10:08 9:26 8:53
24 65.7 70.7 29 50 110 65 9:33 9:55 6:17 8:01
25 39.5 67.8 92 79 98 76 11:15 9:31 4:25 6:28

Table 2: Sleep improvement results.

  T0 T1 sig. (<0.05) T-Values
Sleep efficiency index 70.6 (14.6) 81 (11.6) 0 -4.65
Sleep latency 49 min. (52) 29 min. (31) 0.024 2.423
WASO 87 min. (51) 59 min. (37) 0.002 3.576
Hours in bed 10:42 (1:01) 10:27 (1:11) 0.195 1.336
Hours of sleep 7:44 (1:34) 8:29 (1:35) 0.009 -2.875

Table 3: Average sleep improvement (standard deviation).

Table 1 presents the interventions implemented to provide pain relief. There was no pain relief medication involved in four cases. Two participants (17 and 21) were made to perform activities because their pain was caused by a lack of movement during the day. Participant one received haptotherapy which is a form of massage. This complementary form of care is very common in the Netherlands and it helps to provide pain relief. One participant (5) was given other activities, so that she could get more rest.

Discussion and Conclusion

This is the first study performed with a valid objective instrument to measure the effect of treatment. The Actiwatch (AW2) is not only a valid instrument in sleep interventions [18] but can be useful as an instrument in other inventions such as pain treatment interventions. This offers a much broader view on sleep and provides an even greater awareness that sleep is influenced by physical conditions. This seems very logical, because sleeping with pain is difficult. We do not know yet whether people with ID react in the same way to pain as people without ID. This question is difficult to answer. What we did observe is that pain is often underestimated or that pain is recognized after the failure of a series of behavioural interventions. If pain is suspected, the next step is pain measurement, which was difficult for caregivers. This was partly because they were not familiar with the pain assessment instruments and partly because caregivers find it difficult to assess pain objectively. Many pain signals were referred to as behavioural problems, which meant that many interventions initially targeted behaviour, which did not achieve any improvement. There was no focus on somatic problems and/or interventions. Only after behavioural interventions failed to achieve their expected result, was further investigation performed on somatic problems. When pain was measured and found, active investigation was performed to discover the cause of the pain. It was remarkable that some pain behaviour was described as ‘normal’ or ‘this is behaviour he/she has had for years’ by caregivers. We also noticed that the severity of the mental and locomotive disability can subjectively distort a caregiver’s expectation that a resident could be experiencing pain. For instance, pain relief is almost never provided after an epileptic fit. Only after actigraphy and the assessment of epilepsy during the night, and once awareness that this could cause pain was understood, was a pain measurement performed and a high pain score found. Further research should be conducted to produce guidelines for pain relief after an epileptic fit. Many people with ID have regular or daily epileptic fits and there is hardly any recognition of pain after a fit. We overlook the signals of pain and people with ID have to live longer with pain than is necessary.

The Actiwatch is used in many residential facilities in the Netherlands so its specific use in measuring the effects of pain treatment can be broadly implemented.

We observed that a wider range of interventions can be performed to relieve pain in people with Intellectual Disability. Although paracetamol is used very widely, Complementary and Alternative Medicine (CAM) was used in only one case. Haptotherapy, which is a CAM intervention, worked very well for participant 1. CAM could be used more often in care. In the Netherlands there is a lack of knowledge on using CAM in the care for people with ID.

The REPOS has been proven as a good instrument to measure suspected pain in people with ID, although the REPOS was designed for the elderly. We did not perform second REPOS as a control because the instrument is not made for use in an intervention study.

The REPOS has been proven as a good instrument to measure suspected pain in people with ID, although the REPOS was designed for the elderly. We did not perform second REPOS as a control because the instrument is not made for use in an intervention study.


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