Pain experience of adults with intellectual disabilities--caregiver reports.

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Journal of Intellectual Disability Research 914

volume 59 part 10 pp 914 –924

OCTOBER

doi: 10.1111/jir.12194 2015

Pain experience of adults with intellectual disabilities – caregiver reports I. Weissman-Fogel,1 A. Roth2 & K. Natan-Raav,2 M. Lotan3 1 Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel 2 Israel Elwyn Supported Living Program, Jerusalem, Israel 3 Department of Physical Therapy, Ariel University, Ariel, Israel

Abstract Background Pain is a problem for individuals with intellectual and developmental disability (IDD), secondary to their impairments, due to invasive medical procedures that these individuals undergo on a regular basis. Current literature indicates pain as a common experience for children with IDD, yet no such reports have been made in regard to adults with IDD. Purposes This study aimed (1) to re-establish the reliability of caregivers as proxy observers; (2) to evaluate the pain experience of adults with IDD by caregivers’ proxy report; and (3) to assess the sensitivity of the Non-Communicating Adult Pain Checklist (NCAPC) as a pain scale for chronic pain (CP) in individuals with IDD. Method Frothy-three caregivers, working for more than 3 years with adults with IDD, performed pain assessments of 187 individuals living in a residential facility. Two caregivers evaluated whether each resident suffers from pain and assessed the intensity, causes and duration of pain experience. FurtherCorrespondence: Prof Meir Lotan, Faculty for Health Sciences, Physical Therapy Dependent, Ariel University, Ariel, 40700, Israel (e-mail: [email protected]).

more, 52/187 residents [26 with CP and 26 pain free (PF) based on medical record and caregiver reports] were evaluated by an additional seven caregivers using the NCAPC in order to establish the reliability of caregivers as proxy observers. Results According to caregivers’ report, 48% of adults with IDD suffer from pain at a mean level of 6/10, with more than 10% suffering from high levels of pain on a constant basis. Inter-rater agreement was found mostly high with intraclass correlation values ranging between 0.73 and 0.93. Using the NCAPC, we were able to identify CP and PF individuals with a significant score difference (P = 0.003). Conclusions The results support the use of the NCAPC as a scale to evaluate CP in adults with IDD. The findings reiterate the reliability of caregivers as proxy observers and the importance of involving them in identifying pain behaviours of their protégées. Our findings reiterate the need for an immediate action for appropriate pain management protocols for adult with IDD. Keywords adults, intellectual and developmental disability (IDD), Non-Communicating Adult Pain Checklist (NCAPC), pain, pain assessment, reliability

© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

volume 59 part 10 october 2015

Journal of Intellectual Disability Research 915 I. Weissman-Fogel et al. • Pain experience of adults with IDD

Introduction Pain has a negative effect on emotional status, functional ability, mobility, ability to work, interpersonal relationships and social activities, leading to increased use of healthcare services and an accompanying increase in healthcare costs (Merskey & Bogduk 1992). This situation is worsened when individuals suffering from pain cannot describe their pain experience, such as those with intellectual and developmental disability (IDD) (Abu-Saad 2000). Individuals with IDD often have multiple (and sometimes complicated) medical problems (Beange et al. 1995; Cooper 1998; Prater & Zylstra 2006). Despite the fact that a number of studies have documented substantially higher rates of both chronic and acute pain in individuals with IDD compared with the general population (American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health & American Pain Society Task Force on Pain in Infants, Children, and Adolescents 2001), the prevalence of pain in the IDD population is unclear, mainly due to communication problems (Reid et al. 2003). For example, 83% of children with IDD were found to suffer from pain on a regular basis, at a level higher than 3 on a 10-point scale (McGrath et al. 2000), and 53% of young adults with cerebral palsy and IDD experienced moderate-to-severe pain almost daily (Schwartz et al. 1999). These findings suggest that despite its commonality, pain in people with severe IDD is often overlooked (Stallard et al. 2001). However, it is clear that pain management starts with appropriate evaluation. The preferred way to evaluate pain experience is by self-report, yet this is not an option for many individuals with IDD. Some forms of self-report can be used by certain individuals with neurological and cognitive impairments (Ferrell et al. 1995; Parmelee 1996; Fanurik et al. 1998). However, those unable to report their own pain are dependent on their caregivers’ observational skills and experience. Therefore, a caregiver who knows the observed individual well will report symptoms more accurately (Samet et al. 1993; Gorelick et al. 2002). Recent studies have shown that caregivers’ reports are the best alternative to self-reports in individuals with IDD regarding pain (Breau et al.

2004; Lotan et al. 2009b). Moreover, in a group of individuals with IDD with good communication abilities, the caregivers’ reports of pain experience corresponded well with the reports made by individuals experiencing acute (Schneider & LoBiondo-Wood 1992) and longer lasting pain (Miller 1996). Currently, pain management in individuals with IDD is not properly provided. As of today, pain experience of individuals with IDD has not been investigated in a large group of adults with IDD. The Non-Communicating Adult Pain Checklist (NCAPC), a recently developed scale (Lotan et al. 2009b), was constructed through observation of pain behaviours during acute painful procedure. Yet, its ability to detect non-procedure-related pain [including chronic pain (CP)] is still questioned. Moreover, the ability of caregivers working with individuals with IDD to detect CP experiences of their protégés needs further support. The current study aimed to (1) re-establish caregivers’ ability to assess pain behaviours in individuals with IDD; (2) asses the incidence and severity of pain in adults with IDD based on behavioural manifestations; (3) study pain-related behavioural manifestations in subjects with IDD, whether they can be used by caregivers for pain evaluation. This will be proven by high inter-rater reliability coefficient which indicates that the judgment process is stable and the resulting scores are reliable; and to (4) investigate the ability of the NCAPC to detect pain behaviours that are not procedure related in adults with IDD.

Methods Participants Part I Forty-three experienced caregivers employed at Israel Elwyn’s (IE) Supported Living Program (Jerusalem) for at least 3 years were recruited (caregivers are trained on the job and typically assigned to the same residents, taking care of all residents’ daily needs: bathing, clothing, feeding and recreational activities; i.e. caregivers experienced with same residents were asked to assess residents’ pain experience).




Part II Seven caregivers experienced with the NCAPC that are employed at IE Supported Living Program (Jerusalem) for at least 3 years were recruited. Setting Two hundred fifty adults with IDD, some showing physical challenges, reside at the IE Supported Living Program and receive round-the-clock support in their daily functioning. The complex is divided into three residences: T (mild-to-moderate level of IDD, most with verbal abilities), G (low moderate to high functioning severe level of IDD, most without verbal abilities) and S (severe-toprofound level of IDD, most without verbal abilities) with 90, 90 and 70 residents in each residence, respectively. Ethical issues The institutional review board of the University of Haifa approved the study protocol, and written consent was signed by each caregiver. The level of IDD of all residents was determined (according to national laws and regulations) by an official national evaluation board assigned by the Ministry of Social Affairs and Social Services, and recorded in each resident’s medical file. 1 Residence T: Seventy-four residents were evaluated by 19 caregivers. 2 Residence G: Seventy residents were evaluated by 12 caregivers. 3 Residence S: Forty-five residents were evaluated by 12 caregivers. In total the pain experiences of 187 residents were evaluated by 43 experienced caregivers familiar with the residents.

Procedure Part I Each caregiver was asked to evaluate the pain condition of residents with whom they were familiar (between 9 and 11 residents per caregiver, according to the size of the tenant group they were working with) during a staff meeting. On average, each caregiver evaluated between 5 and 10 residents. Residents’ lists provided to each caregiver were arranged so that each resident was blindly evaluated by two

caregivers. Evaluation was performed by answering the following questions: (1) In your opinion, is the resident suffering from pain? (2) If yes, how would you score his/her pain level using a verbal numerical pain scale ranging from 0 ‘no pain’ to 10 ‘the worst pain imaginable’? (3) What is the cause of the pain? (4) On what symptoms are you basing your opinion? and (5) Is this pain permanent or transient? Part II Seven caregivers volunteered to participate in a 10-h workshop that educated them in using the NCAPC in order to become ‘pain trustees’ (the structure of the workshop will be fully reported elsewhere). At the end of the workshop each participant was asked to assess the pain experience of 10 individuals. Of those 10 individuals, 5 were not suspected to suffer from any pain condition (both according to medical records and caregivers reports during the first stage of this project), and termed – pain free PF. Of those 10 individuals, 5 were suspected as suffering from chronic pain (through medical records and caregivers reports as suffering from chronic painful conditions during the first stage of this project), and termed – chronic pain CP. The instructions were to perform the task at their convenience, within a time frame of 2 weeks. The pain trustees were blinded to the fact that the residents’ lists (N = 52) included individuals suspected of CP or PF.

Materials The NCAPC was constructed using the NonCommunicating Children Pain Checklist (NCCPC) as a basic form through observation of pain behaviours of 228 adults with IDD. The scale evaluates the pain experience of adults with IDD. It is divided into six subscales: vocal expression, emotional reaction, facial expression, body language, protective reactions and physiological signs, and contains 18 items, each rated on an ordinal 4-point scale (0–3). The total score ranged from 0 (no pain behaviour observed) to 54 (maximum expression of all pain behaviours during a 10-min observation). The NCAPC scale was found to hold promising psychometric properties such as high internal consistency (alpha = 0.77), sensitivity of each item to




pain behaviours (P < 0.05) as well as high sensitivity to register pain behaviours of adults at all levels of IDD (Standardized Response Mean (SRM) = 2.05) (Lotan et al. 2009a), very high intra- and inter-rater reliability [intraclass correlation (ICC) = 0.94–0.91 correspondingly] (Lotan et al. 2009b), as well as sensitivity to distinguish between pain and non-pain situations and between different pain situations and pain experiences (Lotan et al. 2010). This scale was used during the phase II of this project.

are regarded as measurement error (Shrout & Fleiss 1979). Currier (1990) suggested that ICCs in the range of 0.60–0.79 might be considered as moderate reliability, whereas ICCs in the range of 0.80– 0.89 would be considered as high reliability.

Results Part I Participants and residents

Statistics Data were analysed with SPSS version 14 (SPSS, Inc., Chicago, USA). Analysis of variance was used to evaluate the difference in pain-level reports between different three dormitories. Chi-square test was used to test differences in the frequencies of pain causes between three residences. ICC coefficients were used in order to evaluate the reliability of scores between different raters. In the ICC, a two-way random-effect model where both raters and measures are random was used. We chose to apply the ICC (2,1) model single measures (as this is a more common way of using ICC and coheres with daily situations where one rater is usually doing the pain evaluation) that is based on a two-way random-effect model with consistency agreement, which all variations between occasions

Forty-three experienced caregivers [range: 24–64 years; mean ± standard deviation (SD): 38 ± 10.2 years] working for at least 3 years (3–25 years; mean 9.3 ± 5.2 years) participated in the study. The age range of the 187 residents was 15–75 years (mean 38.7±13.2 years) and they had different degrees of IDD: mild (N = 7), moderate (N = 95), severe (N = 63) and profound (N = 22; Table 1). Identification of pain and pain-free subjects Ninety individuals (48%) were considered to be suffering from pain by both caregivers (18: residence T; 43: residence G; and 29: residence S). Seventytwo individuals (38%) were considered as not experiencing pain (19: residence T; 36: residence G;

Table 1 Demographic data regarding residents within the facility

Dormitory

No.

Age (range) mean ± SD

Gender (F/M)

Level of IDD

Ambulation

Communication

Tal

90

34–83 (57 ± 10.12)

F = 36 M = 54

IW = 76 WU = 14

BVA = 82 NV = 8

Gil

92

24–78 (45 ± 13.2)

F = 30 M = 62

IW = 92 WU = 0

BVA = 51 NV = 41

Shoval

70

26–76 (50 ± 14.1)

F = 33 M = 37

Mi = 8 Mo = 79 S=3 P=0 Mi = 0 Mo = 54 S = 38 P=0 Mi = 0 Mo = 13 S = 26 P = 31

IW = 22 WU = 48

BVA = 18 NV = 52

BVA, basic verbal ability (at least able to verbally convey basic needs); F, females; IDD, intellectual and developmental disability; IW, independent walkers; M, male; Mi, mild; Mo, moderate; No., number of residents; NV, non-verbal (no verbal ability); P, profound; S, severe; SD, standard deviation; WU, wheelchair users.




17: residence S). For the remaining 27 individuals (14%), the two caregivers were unable to agree if they were suffering from pain. Twenty of the 90 individuals suspected of suffering pain (6: residence T; 6: residence G; 8: residence S) were assessed as suffering pain on a regular basis (permanent–most or all of the time), and the other 70 individuals (12: residence T; 37: residence G; 21: residence S) were evaluated as suffering only some of the time or under specific circumstances (transient). The average level of pain of residents considered to be experiencing pain did not differ between residences (different subpopulations) [degrees of freedom (df) = 104, F = 2.547, P = 0.083]: residence G (mean 5.7/10, SD = 2.59), residence S (mean 6.0/ 10, SD = 2.4), residence T (mean 4.7/10; SD = 2.1). Scheffe test between residence groups was not significant, too (above P > 0.136 for each comparison). When groups were subdivided according to the level of IDD (mild, moderate, severe, profound), differences were found in level of pain expression as measured by the caregivers between all levels of IDD (total df = 139, F = 6.038, P < 0.03): mild and moderate (mean 5.371/10, SD = 2.158), severe (mean 4.579/10; SD = 1.643), profound (mean 6.889/10; SD = 2.026). Scheffe test between the IDD groups was found significant between profound and other IDD groups (mean difference 0.759, SD = 0.2658 P = 0.019 vs. moderate, mean difference 1.155, P = 0.004 vs. severe).

Causes of pain The caregivers evaluated possible reasons for pain and these are presented in Table 2. It seems that much of the pain (44.1% of all causes) could be alleviated by better adaptation of the wheelchair to the user and correct wheelchair use; improving care of digestive, oral/dental and orthopaedic systems; and availability of analgesics for menstrual pain. A post hoc chi-square test showed that the reasons for pain differed significantly between residences (P < 0.0001, χ2 = 108.613), presumably due to a combination of differences in levels of IDD, communication abilities and functional abilities. As can be seen in Table 2, most items presenting different behaviours/ ways of pain expression were found to differ between residential settings. Symptoms that caregivers used to assess pain in individuals with intellectual and developmental disability Table 3 summarises the symptoms that caregivers used to detect pain in adults with IDD. Most of the residents showed between two to four signs of pain; therefore, the number of symptoms presented is greater than the number of residents. Inter-rater reliability Average measures were applied to average rating of pain level (0–10) between the two judges in regard

Table 2 Incidence of pain causes, suspected by caregivers, across dormitories

Cause of pain

Tal no. (%)

Gil no. (%)

Shoval no. (%)

Full sample no. (%)

Wheelchair usage Unknown Digestive system Dental problems Orthopaedic problems Menstruation Seasonal illness Emotional state Other All residents

2 (5%)a 7 (6%) 13 (15.3%)a 1 (1.3%)a 20 (25.3%)b 1 (1.3%)b 16 (20.3%)a 9 (11.4%)b 2 (2.6%)b 18/46

0 (0%)a 22 (14.1%) 13 (16.5%)a 7 (8.2%)b 6 (7.1%)a 13 (15.3%)a 12 (14.1%)a 2 (2.4%)a 10 (11.9%)a 43/87

12 (41%)b 27 (30%) 4 (7.4%)a 0 (0%)a 4 (7.4%)a 0 (0%)b 0 (0%)b 4 (7.4%)a,b 7 (13.8%)c 29/54

14 (15.5%) 37 (30%) 30 (13.8%) 8 (3.7%) 30 (13.8%) 14 (6.4%) 28 (12.8%) 15 (6.9%) 19 (20%) 90/187

a, b and c were used to suggest similarities between different residential settings as calculated through the post hoc chi-square test. Tal residence: mild-to-high function moderate level of intellectual and developmental disability (IDD); Gil residence: low level of moderate-tohigh functioning severe level of IDD; Shoval: severe-to-profound level of IDD.




Table 3 Behaviours caregivers use in order to detect pain in adult residents with IDD

N (%) of residents Behaviour Vocal expression

Facial expressions General behaviour Change in feeding routine

Emotional response

Body movements/posture

Body functions Physiological changes

Aggression

Odd behaviours

Shouting Whispering Loud noises, coughing Talks more than usual, stops talking, saying words in regard to pain Facial expression, something about the eyes, red eyes Staying in bed, wants to sleep, weak, sleeps all the time, sits a lot Waking up at nights, does not sleep Compulsive eating Stops eating Stops drinking, compulsive drinking Vomiting Crying Nervous, unsettled, angry, seems afraid Staying near caregiver Apathy, sadness Body rocking, throw head backwards, claps hands Touches where it hearts Walks slower than usual, walks more than usual, limping, instable walking Stands with back bent Constipation Change in facial colour: yellowish face, pale face, blushed face Fever Swollen feet Dry skin Excessive salivation Increased aggression towards others Scratches bites or hits one self, bites hands Swearing, coarse Sucking one’s blanket Hand on/in mouth Stands in a special place (near the window) Scratches his hand on the floor Plays with his fingers

Tal

Gil

Shoval

3 (17) – 1 (6) 16 (89) 1 (6) 5 (28) – – 9 (50) 2 (14) – 12 (66) 2 (14) – 5 (28) – 6 (33) 5 (28) – – – – – – – – 3 (17) 3 (17) – 1 (6) – – –

13 (30) 1 (2) 2 (5) 13 (30) 2 (5) 5 (11) 1 (2) 2 (5) 2 (5) 2 (5) 1 (2) 10 (23) 11 (26) 1 (2) – 2 (5) 4 (9) 4 (9) 7 (16) 2 (4) 9 (21) 4 (9) 2 (4) 1 (2) – 9 (21) 18 (42)

15 (52) – 1 (3) 4 (14) 1 (3) 1 (3) – – 1 (3) – – 10 (34) 6 (21) 1 (3) – 1 (3) 1 (3) – – – – – – – – 1 (3) 3 (10)

1 (2) 6 (14) 1 (2) 1 (2) 4 (9)

– 1 (3) – – –

IDD, intellectual and developmental disability.

to a single (same) resident. Single measures of ICC (2,1) = 0.71 (ranged 0.52–0.83) (P < 0.001) for residence T were found. Single measures of ICC (2,1) = 0.85 (ranged 0.77–0.90) (P < 0.001) for residence G were found. Single measures of ICC (2,1) = 0.88 (ranged 0.78–0.93) (P < 0.001) for residence S were found. Thus, a moderate-tohigh inter-rater reliability (ranged 0.52–0.97) was found between two caregivers when evaluating pain behaviours of individuals with IDD.

Part II Evaluating caregivers’ ability as proxy observers through the use of the Non-Communicating Adult Pain Checklist The participants (seven ‘pain trustees’) in this part of the study were asked to evaluate 52 residents using the NCAPC. The results show that all participants suspected of pain were scored above the NCAPC cut-off point (CP: mean 26.1, SD = 9.0; PF: mean 20.3, SD = 9.7). The statistical results for




30.0

Pain scores for chronic pain 26.1

NCAPC scores

25.0

20.3

20.0 15.0 10.0 5.0

P = 0.003 0.0

1 Chronic pain

2

3 No pain

Figure 1 Pain scores of chronic pain. NCAPC, Non-Communicating Adult Pain Checklist.

a one-tail, equal variance assumed t-test show that using the NCAPC enables to distinguish between CP and PF individuals based on the difference in NCAPC score (t = 2.6 df = 68, P = 0.06), bootstrap results based on 1000 bootstrap samples, showed only −0.002 bias, with P = 0.0065 (see Fig. 1).

Discussion In the first part of this investigation, caregivers were asked to evaluate the pain experience of adults with IDD who were under their direct care for more than 3 years. This evaluation was performed based on behavioural manifestations. The main findings of this section of the investigation were that approximately half of the residents (N = 90) were suspected of suffering pain, with more than 10% suspected of suffering constant high levels of pain (at least 6 out of 10). These findings are congruent with previous reports (Schwartz et al. 1999) and show high levels of pain among adults with IDD that demand immediate intervention and resolution. When considering the causes of pain, it seems that approximately one-third of the causes are transient, such as seasonal illness (10–20.3%) or unknown (9–50%). Yet, almost half of the pain seems to have a known cause (wheelchair usage, dental problems, menstrual period, orthopaedic or digestive system problems) and therefore should be treatable. In the second part of this investigation, the ability of the NCAPC to detect pain behaviours not related to procedural pain was evaluated and the ability of caregivers to evaluate the expressions of CP in indi-

viduals with IDD was reassessed. The main findings suggest that the NCAPC is sensitive to nonprocedural pain expressions in individuals with IDD and that caregivers are sensitive and reliable observers with the ability to serve as proxy observers for their protégées. Constant pain has a negative effect on activities of daily living, interpersonal relationships and social activities (Merskey & Bogduk 1992). This situation is worsened when the suffering individuals cannot express their discomfort clearly, such as often is the case of adults with IDD. The lack of access to analgesics and failure to treat pain should be regarded not only as poor medicine but also as unethical and an abrogation of fundamental human rights (Brennan et al. 2007). Moreover, behaviours that were once labelled as ‘challenging’ in this population have been found to originate from painful medical problems (Hart 1988). These ‘challenging behaviours’ may be caused by chronic unrelenting pain in an individual without the ability to convey his or her suffering. Clearly, when a likely cause of pain has been identified, the person should be treated. The behaviours identified and classified by the caregivers as pain markers are numerous and show the variability of pain behaviours among individuals with IDD. On the one hand, these behaviours might indicate pain or an underlying medical condition causing pain; on the other hand, they might be the regular behaviours of a specific resident (moaning, grunting and grimacing), with no connection to pain (Clements 1992). Therefore, caution should be taken when implementing a pain management programme involving medication. The fact that individuals with IDD are an extremely heterogeneous group and therefore present their pain in an individual manner has also been suggested by other researchers (McGrath et al. 1998; Breau et al. 2004; Carr & Owen-DeSchryver 2007). Thus, assessing pain in individuals with IDD remains challenging. The present investigation reiterates the notion that individuals with severe levels of IDD are at risk for being undertreated for pain (Regnard et al. 2003). The findings show that in centralised housing for individuals with moderate-to-severe IDD (residences T and G), 46–47% of those in pain had an identifiable cause, whereas in




individuals with severe-to-profound levels of IDD (residence S) only 37% had an identifiable cause. Furthermore, the greater the level of disability, the higher the percentage of pain of unknown origin; specifically, 8.9% of those in pain of unknown origin in residence T (mild-to-moderate level of IDD, most with verbal abilities) rises to 25.9% in residence G (moderate-to-severe level of IDD, most without verbal abilities) and peaks to 50.0% in residence S (severe-to-profound level of IDD, most without verbal abilities). These findings emphasise and confirm the difficulty of assessing pain in individuals with lower cognitive abilities, even by caregivers who are familiar with them (at levels of severe-to-profound IDD) as reported previously (Stallard et al. 2001; Regnard et al. 2003; Mason & Scior 2004; Lotan et al. 2009b). The behaviours used by the caregivers to detect pain lend support to the existing pain assessment scales used for children and adults with IDD including the NCCPC (Breau et al. 2002), the Pain and Discomfort Scale (Bodfish et al. 2001) and the NCAPC (Lotan et al. 2009b), which seems to be based on similar behaviours. Our findings confirm that residents who were identified as suffering from illnesses, putting them with a predisposition to suffer pain, and those who were pain free, based on behavioral manifestations – were distinguished as such by the NCAPC. Our findings also show the complexity of pain assessment in this population, which relies not only on the sensitivity of the assessor but also on close acquaintance with the person suspected of suffering. The fact that PF residents had a relatively high score average (20.3) may be due to the novelty of the observers using the scale and to their desire to show how good they were in detecting even small behaviours associated with pain as they have just graduated the course. When communication is difficult, assumptions about pain should be made with caution by healthcare professionals. Because the expression of pain is a combination of physical and emotional states, coping style and family and cultural expectations, it can be easily misinterpreted (American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health & American Pain Society Task Force on Pain in Infants, Children, and Adolescents 2001). Yet, in the case of

individuals with IDD, most investigations suggest that caregivers’ reports can be trusted when evaluating pain. On the other hand, some researchers disregard proxy reports, claiming they are not sufficiently valid. On the other hand, parents of individuals with IDD describe one of the most obvious signs of pain as being ‘A change in “regular” behaviour’. The range of behaviours described in the current investigation include ‘seems afraid’, ‘standing by the window’ or ‘sucking her blanket’. These changes are individual and emphasise that significant acquaintance with the person with IDD is needed when self-reporting of pain is not an option. The need for proxy report in nonverbal individuals with IDD was reported by McGrath (1998) and McGrath et al. (1998), as well as by others (Giusiano et al. 1995). Other recent studies support the present findings by also showing that caregiver reports are the best alternative to selfreports to understand and alleviate pain in children (Breau et al. 2004) and adults (Lotan et al. 2010) with IDD. Moreover, the relatively high inter-rater reliability found in our study supports the previous findings (Lotan et al. 2010) that caregivers should be used as ‘spokespersons’ for individuals with IDD due to their deep knowledge of those in their care. Care should be taken when interpreting the results of this study into clinic situations. The assumption that individuals are suffering from pain solely based on proxy report is dangerous as individuals with IDD are usually exposed to high dosages of assortments of medications. Therefore, overtreatment with additional drugs is as dangerous as undertreating these individuals. Yet the present investigation does not suggest pain management rather raises the possibility of a phenomenon that needs changing. Therefore, the alarming percentages of pain sufferers presented by the caregivers participating in this investigation should be considered as a point of reference for a clinician attempting to assess and treat pain in non-verbal individuals with IDD.

Limitations of the current study Scoring method Scoring by staff was conducted according to memory. Despite the fact that they knew the




residents very well (mean of over 9 years), recalling pain behaviours may be altered due to subjective reasons (last remembered pain episodes, extremity of expressed pain behaviours, personal attitudes towards pain, personal attitude towards a specific resident, etc.). Yet, these limitations are consistent with proxy observer report performed in previous data gathering regarding pain (Breau et al. 2004; Lotan et al. 2009b; Herr et al. 2011) as well as other topics (Huang et al. 2009). Chronic pain observations by trained assessors As it is common for CP to be intermittent, situational and diurnal, it might be that some of the people suspected of CP will not show symptoms at the time of observation (when graded with the NCAPC). Therefore, we attempted at introducing only people reported before as constant pain sufferers with level of pain at 6 and more, and the results suggest that despite such possible predicament the pain behaviours of individuals suspected of CP were found significantly different from the people suspected of being PF, thereby corroborating the sensitivity of the NCAPC to detect CP. Prior acknowledgments of residents by blind assessors The NCAPC users were caregivers working within the residential settings for many years. Despite the fact that we tried to mix the names of the PF and CP residents to blind the assessors to this fact, and despite the fact that we tried to reduce preassessment knowledge by choosing the names of people unfamiliar to the evaluators, they might have known some of the residents on their list as there are some changes in caregiving personnel in the residential settings, and they might have known some of the residents they were suppose to evaluate, thereby preventing complete blindness by the assessors.

Summary and conclusions To summarise, the findings in the present investigation show that almost 50% of adults with IDD suffer from pain and about 10% of them have constant pain at a level higher than 6/10. This situation is severe and needs to be addressed immediately by

clinicians and physicians working with this population. These findings support data suggesting that caregivers are tuned into their support recipient’s individual/unique pain signals and are able to detect these pain cues with high inter-rater agreement. These caregivers should therefore be considered as key players in the implementation of pain evaluation and treatment programmes in adults with IDD. The optimistic side of the current findings is that almost 50% of pains were suspected to be related to known, treatable conditions, such as orthopaedic, dental and abdominal problems; wheelchair adaptation; and menstrual period-related pain. Therefore, the authors call for clinicians from health-related professions to reduce the suffering of adults with IDD, and thereby improve their quality of life.

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Accepted 25 February 2015.


Caregiver experiences of supporting adults with intellectual disabilities in pain.

How adults with an intellectual disability experience bereavement and grief: a qualitative exploration.

Multimorbidity in older adults with intellectual disabilities.

Convergent validity evidence for the Pain and Discomfort Scale (PADS) for pain assessment among adults with intellectual disability.

Hospitalizations of adults with intellectual disability in academic medical centers.

Predictors of specialized inpatient admissions for adults with intellectual disability.

Specific standards of care for adults with intellectual disabilities.

The self-rated health of British adults with intellectual disability.

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Abdominal pain in adults with cystic fibrosis.

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Onset aging conditions of adults with an intellectual disability associated with primary caregiver depression.

Exploring the lived experience of adults using prescription opioids to manage chronic noncancer pain.

The pain experience and psychological adjustment to orthodontic treatment of preadolescents, adolescents, and adults.

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