The prevalence of pain in nursing home residents with dementia measured using an observational pain scale

Background: Studies on pain and pain prevalence in older people with dementia are limited compared to those on cognitively intact older people. Pain prevalence rates in older people with dementia are estimated to be between 28% and 83%. Aims: This study aimed to explore pain prevalence in nursing home residents with dementia using observational scale PACSLAC‐D, and to identify the association between pain prevalence and (dementia) demographic parameters such as cognitive status, gender, analgesic use and co‐morbidity. Methods: Using an observational study design, 117 residents were observed and assessed for pain during personal morning care. Prevalence data were calculated and regression analyses applied. Results: This study showed that almost half of the participants (47%) experienced pain to some extent. However, overall pain intensity scores were relatively mild. Among the independent variables, co‐morbidities, analgesic use and the adjusted interaction term ‘co‐morbidities+analgesic use’ had the strongest associations with pain and were thus shown to be valid significant predictors. Conclusion: With its relatively new approach of measuring pain using an observational scale, this study confirms the expectation gleaned from other studies on less impaired older populations: namely, that pain prevalence in older residents with dementia in Dutch nursing homes is high.     

A Comparison of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and Pain Assessment in Advanced Dementia Scale (PAINAD)

BackgroundThere is currently no gold standard instrument for assessing pain in severely cognitively impaired adults who are unable to provide self-report.AimsTo determine interrater reliability of the PACSLAC and PAINAD in assessing pain behaviors in patients with the same pain stimulus, determine the consistency of the reliable changes between and within the instruments and assess nurse preference for either instrument.DesignA single-group, within-subjects repeated-measures design was implemented.SettingThe study took place in a small suburban hospital.Participants/SubjectsPain levels were observed at 24, 48, and 72 hours postsurgery using two instruments: Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and Pain Assessment in Advanced Dementia Scale (PAINAD). These instruments were selected because they are among the most commonly recommended tools for clinical use. Interrater reliability was analyzed along with reliable changes in pain for each period, and the study concluded with the nurse raters completing a preference survey.MethodsA convenience sample of 30 patients was used with a diagnosis of severe dementia rendering the patient unable to reliably express pain, 60+ years of age, recovering from hip fracture surgery.ResultsGreater interrater reliability was found for the PACSLAC, with reliable change potentially affected by the type and level of pain medication. The nurses’ preference for the tool was split.ConclusionsThe results of this study indicate that the PACSLAC may be the more reliable tool over the PAINAD; however, rater training and familiarity with the tool is critical.     

Pain in severe dementia: A comparison of a fine‐grained assessment approach to an observational checklist designed for clinical settings

Background

Fine‐grained observational approaches to pain assessment (e.g. the Facial Action Coding System; FACS) are used to evaluate pain in individuals with and without dementia. These approaches are difficult to utilize in clinical settings as they require specialized training and equipment. Easy‐to‐use observational approaches (e.g. the Pain Assessment Checklist for Limited Ability to Communicate‐II; PACSLAC‐II) have been developed for clinical settings. Our goal was to compare a FACS‐based fine‐grained system to the PACSLAC‐II in differentiating painful from non‐painful states in older adults with and without dementia.

Method

We video‐recorded older long‐term care residents with dementia and older adult outpatients without dementia, during a quiet baseline condition and while they took part in a physiotherapy examination designed to identify painful areas. Videos were coded using pain‐related behaviours from the FACS and the PACSLAC‐II.

Results

Both tools differentiated between painful and non‐painful states, but the PACSLAC‐II accounted for more variance than the FACS‐based approach. Participants with dementia scored higher on the PACSLAC‐II than participants without dementia.

Conclusion

The results suggest that easy‐to‐use observational approaches for clinical settings are valid and that there may not be any clinically important advantages to using more resource‐intensive coding approaches based on FACS. We acknowledge, as a limitation of our study, that we used as baseline a quiet condition that did not involve significant patient movement. In contrast, our pain condition involved systematic patient movement. Future research should be aimed at replicating our results using a baseline condition that involves non‐painful movements.

Significance

Examining older adults with and without dementia, a brief observational clinical approach was found to be valid and accounted for more variance in differentiating pain‐related and non‐pain‐related states than did a detailed time‐consuming fine‐grained approach.     

The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia

In view of the need for valid, reliable, and clinically useful scales to assess pain in elderly people with dementia, this study evaluated the psychometric properties of translated versions of the PAINAD, PACSLAC, and DOLOPLUS-2 scales. In an observational study design, two raters simultaneously assessed the nursing home residents (n=128) for pain during influenza vaccination and care situations. The PACSLAC was valued as the most useful scale by nurses. Cronbach's alpha was high (>.80) for the total scale at T2 and T3 and adequate for the 'Facial expression' and 'Social/personality/mood' subscales. IC scores for the 'Activity/body movement' and 'Physiological indicators/eating/sleeping changes/vocal behaviors' subscales were low. It demonstrated good validity and reliability, although the scale should be further refined. This refinement should increase homogeneity. The PAINAD showed good psychometric qualities in terms of reliability, validity, and homogeneity (alpha ranged .69-.74 at T2 and T3) (except for the 'Breathing' item). The PAINAD scale had lower scores for clinical usefulness in this sample. The Dutch version of the DOLOPLUS-2 was considered more difficult to use but showed acceptable psychometric qualities in terms of the issues assessed, except for the 'psychosocial reactions' subscale. IC of the DOLOPLUS were adequate for the total scale (alpha ranged .74-.75) and almost all subscales (alpha ranged .58-.80). Findings of this study provide evidence of validity and reliability of the three pain assessment scales. Now that a pain scale is available, future studies also need to focus on its implementation in nursing practice.     

Pain in Alzheimer's disease: nursing assistants' and patients' evaluations

AIM: This paper reports on a study examining the level of agreement between the pain perceptions of nursing assistants, older people without dementia and patients with Alzheimer's dementia. It was hypothesized that nursing assistants would overestimate the pain experience of patients with Alzheimer's dementia. BACKGROUND: There is now increasing evidence that, in contrast to other subtypes of dementia, patients with Alzheimer's disease might experience a decrease in pain. It is unfortunate that these latest insights into the complex relationship between subtypes of dementia and pain are not always included in education programmes for nursing assistants. METHOD: Twenty patients with Alzheimer's disease and 17 older people with arthrosis and/or osteoporosis but no dementia and their personal nursing assistants participated in the study. Pain experience was assessed using the Coloured Analogue Scale for the assessment of Pain Intensity and Pain Affect, the Faces Pain Scale, and the Checklist of Non-verbal Pain Indicators. The data were collected in 2002-2003. RESULTS: Before and after walking, the absolute difference in pain evaluation between nursing assistants and older people without dementia was statistically significantly less than the difference in pain evaluation between nursing assistants and patients with Alzheimer's disease on the Coloured Analogue Scale for Pain Intensity (P = 0.007 and P = 0.04, respectively) and on the Coloured Analogue Scale for Pain Affect (P = 0.009 and P = 0.01, respectively). CONCLUSION: Nursing assistants may overestimate the extent of suffering from pain of patients with Alzheimer's disease. They might be very well able to estimate this pain, provided they were educated about new insights into the influence of the various subtypes of dementia on pain.     

The reliability and validity of pain interference measures in persons with spinal cord injury.

The current study compared the psychometric properties of 2 commonly used measures of pain-related interference, the Graded Chronic Pain (GCP) Disability scale and 3 modified versions of the Brief Pain Inventory (BPI) Interference scale. Participants were 127 persons with spinal cord injury (SCI) who reported pain on a survey. The results suggest that the GCP Disability scale and 3 versions of the BPI Interference scale are reliable and valid measures of pain-related interference in persons with SCI and pain. All 4 measures evidenced excellent internal consistency. The composite scores and individual items of the GCP Disability scale and each version of the BPI Interference scale were significantly related to average pain intensity during the past week and a global measure of psychological functioning. Finally, as pain intensity ratings increased (from mild to moderate to severe), so did the composite and item-level ratings of interference for each version of the BPI Interference scale and GCP Disability scale. Strengths and weaknesses of each measure for use with persons with disability and pain are discussed. PERSPECTIVE: The GCP Disability scale and 3 versions of the BPI Interference scale (modified for use in persons with disabilities) appear to be reliable and valid measures of pain-related interference in persons with SCI. Future research should examine their psychometric properties in other disability populations.     

Cancer-Related Symptom Assessment in France: Validation of the French M. D. Anderson Symptom Inventory

This multicenter study was intended to validate the French version of the M. D. Anderson Symptom Inventory (MDASI-Fr) in French cancer patients (n = 162) with solid tumors or hematological malignancies. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) was used as a part of the validation. Factor analysis showed three underlying constructs for symptom items: general symptoms (pain, fatigue, disturbed sleep, shortness of breath, drowsiness, dry mouth, and numbness or tingling items); emotional and cognitive components (distress, sadness, and remembering items); and a gastrointestinal component (nausea, vomiting, and lack of appetite items), with Cronbach's alphas of 0.79, 0.73, and 0.71, respectively. Convergent validity was established by comparing MDASI-Fr items with the EORTC QLQ-C30 scale and the Brief Pain Inventory (BPI). Overall, the 19-item MDASI-Fr score correlated well with the QLQ-C30 global health status, and the pain item of the MDASI-Fr was highly correlated with the short form of the BPI. The most prevalent symptoms were fatigue, distress, dry mouth, and pain. Twenty-five percent of patients reported moderate or severe pain (numeric rating scale >4 on 0–10 severity ratings). Physician ratings of global change on a second visit were significantly associated with changes in patient ratings on the MDASI-Fr, supporting the sensitivity of the measure. Symptoms interfered most with work and general activity. The MDASI-Fr is a valid and reliable tool for measuring symptom severity and interference in French cancer patients.     

The Concerns About Pain (CAP) Scale: A Patient-Reported Outcome Measure of Pain Catastrophizing

Pain catastrophizing has been recognized as an important and consistent psychosocial predictor of nearly every key pain-related outcome. The purpose of this study was to develop a new measure of pain catastrophizing using modern psychometric methodology. People with chronic pain (N = 795) responded to thirty items. Data were analyzed using item response theory, including assessment of differential item functioning and reliability. Sensitivity to change and validity were examined using data collected from patients undergoing spinal fusion surgery (n = 184) and participating in an ongoing longitudinal aging with a disability survey study (n = 1,388). The final 24-item bank had no items with significant local dependence, misfit, or differential item functioning. Results provided strong evidence of reliability and validity. Six- and 2-item short forms were developed for use when computer adaptive testing is not feasible or desirable. The item bank was named the University of Washington Concerns About Pain scale because the term “catastrophizing” was considered stigmatizing by people with chronic pain. Guidance for score interpretation was developed with extensive feedback from individuals with chronic pain. The Concerns About Pain item bank, short forms, and user manuals are free and publicly available to all users and can be accessed online at https://uwcorr.washington.edu/measures/.PerspectiveThis article presents the development of the University of Washington Concerns About Pain scale, the first item response theory-based item bank of pain catastrophizing. The measure is intended for clinicians interested in improving outcomes of patients with chronic pain and for researchers who study impact of and treatment interventions aimed at reducing pain catastrophizing.     

The development of the Pain Management Inventory for patients with arthritis

The initial development of the Pain Management Inventory (PMI), a precise clinical index of pain management methods intended for use with patients with arthritis, is reported The PMI differs from available instruments in its intent to assess specific methods that the individual is currently using for arthritis pain management and the perceived helpfulness of these methods, thus providing information to be used in combination with other clinical indicators for planning and evaluating ongoing pain self-management Sixteen of 17 items, or methods, initially demonstrated content validity Using methods appropriate for an index of independent items, psychometric testing with a sample of 82 persons having a primary diagnosis of osteoarthritis or rheumatoid arthritis then focused on estimating the construct validity and test-retest reliability of each item Findings assist in better understanding how various methods relate to overall pain management when it is defined as successfully taking care of or handling the pain as viewed within a cognitive-behavioural framework Findings suggest that there are eight items that represent valid and reliable pain management methods These items should be used and evaluated with additional arthritis samples to determine whether the findings replicate     

Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (MOBID): development and validation of a nurse-administered pain assessment tool for use in dementia

Pain assessment in older persons with severe cognitive impairment (SCI) is a challenge due to reduced self-report capacity and lack of movement-related pain assessment instruments. The purpose of this article was to describe the development of the Mobilization-Observation-Behaviour-Intensity-Dementia Pain Scale (MOBID) and to investigate aspects of reliability and validity. MOBID is a nurse-administered instrument developed for use in patients with SCI, where presence of pain behavior indicators (pain noises, facial expression, and defense) may be observed during standardized active, guided movements, and then inferred to represent pain intensity. Initially, the MOBID contained seven items (observing at rest, mobilization of the hands, arms, legs, turn over in bed, sitting on bedside, and teeth/mouth care). This was tested in 26 nursing home patients with SCI. Their primary caregivers, five registered nurses and six licensed practical nurses (LPNs), rated the patients' pain intensity during regular morning care, and by MOBID, both at bedside and from video uptakes. Three external raters (LPNs), not knowing the patients, also completed the MOBID by rating the videos. Internal consistency of the MOBID indicated high Cronbach's alpha (alpha=0.90) after deleting the items for observation at rest and observation of teeth/mouth care. MOBID disclosed significantly more pain than did pain scorings during regular morning care, and video observation demonstrated higher pain intensity than bedside scoring. Intertester reliability for inferred pain intensity was high to excellent (intraclass correlation coefficient=0.70-0.96), but varied between poor and excellent for pain behavior indicators (kappa=0.05-0.84). These results suggest that registration of pain behavior indicators during active, guided movements, as performed by the MOBID procedure, is useful to disclose reliable and valid pain intensity scores in patients with SCI.     

Assessing pain in persons with dementia: relationships among the non-communicative patient's pain assessment instrument, self-report, and behavioral observations.

Pain is a common problem for many older adults, with up to 50% of community-dwelling and 70% to 80% of nursing home residents experiencing pain regularly. Effective pain management requires thorough assessment, appropriate intervention, and systematic reassessment. Pain assessment, however, is complicated by dementia, which impairs memory, reasoning, recognition, and communication, and affects elders’ ability to verbally report pain. As such, observational measures are needed to assess pain in this vulnerable population. The Non-communicative Patient’s Pain Assessment Instrument (NOPPAIN) was developed for this purpose, but more validation of this measure is needed. Thus, the purpose of this study was to (1) evaluate reliability of the NOPPAIN tool when used by nurses and to (2) compare NOPPAIN ratings with self-report and other well-established behavioral rating procedures. Forty participants (20 cognitively intact and 20 impaired) were randomly selected for this study from a larger sample. In the parent study, participants were asked to perform everyday activities (i.e., sit, stand, walk in place, transfer in and out of bed) while being videotaped. The tapes, all previously scored using microanalytic observational coding, were rated again by naïve raters using the NOPPAIN measure. Results indicated (1) high inter- and intrarater reliability of the NOPPAIN and (2) significant correlations of the NOPPAIN with self-reported pain and detailed behavioral coding. Findings support the reliability and validity of the NOPPAIN measurement tool and suggest this easy-to-use tool may be adequate for measuring pain indicators in older adults.     

The Norwegian Doloplus-2, a tool for behavioural pain assessment: translation and pilot-validation in nursing home patients with cognitive impairment

BACKGROUND: Pain assessment is challenging in cognitively impaired (CI) patients due to inadequate self-report skills and observational ratings are an alternative. The Doloplus-2 is developed for pain assessment in the CI and rates somatic, psychomotor and psychosocial behaviours as indicators of pain. AIMS: To translate the Doloplus-2 into Norwegian, to test the Doloplus-2 with regard to criterion validity and to obtain the administrators' evaluation of the clinical performance of the Doloplus-2. METHODS: Nurses at three nursing homes, in collaboration with two research assistants, administered the Doloplus-2 to 59 patients with dementia. The results were compared against experienced clinicians' pain ratings. Regression analyses were performed to explore each different item's contribution to the total pain score. The administrators also completed a debriefing questionnaire. RESULTS: The instrument was translated according to international guidelines. Regression analyses demonstrate that the Doloplus-2 score accounts for 62% (R2) of the expert score and that the four most informative items could explain 68% of the expert score. Analyses of the different Doloplus-2 items indicate that facial expressions explain most and social life least of the expert's pain ratings. The administrators reported that Doloplus-2 was helpful and easy to administer, but questioned the validity of the psychosocial domain. CONCLUSIONS: The Norwegian Doloplus-2 demonstrates satisfactory criterion validity and clinical value in this pilot study. However, the content of the instrument needs a general re-evaluation, especially with regard to the psychosocial items.     

Can End-of-Day Reports Replace Momentary Assessment of Pain and Fatigue?

This study evaluated the ability of end-of-day (EOD) ratings to accurately reflect momentary (EMA) ratings on 10 widely used pain and fatigue items. Rheumatology patients (n = 105) completed ≥5 randomly scheduled EMA assessments of each item per day as well as EOD ratings. Correlations were high between EOD and EMA ratings of the 5 pain items (r = .90 to .92) and somewhat lower for the 5 fatigue/energy items (r = .71 to .86). To examine the ability of EOD ratings to represent 1 week of EMA ratings, 7 EOD ratings were averaged and correlated with EMA (r ≥ .95 for pain items, r = .88 to .95 for fatigue/energy items). Further, averaging only 3 to 5 EOD ratings achieved very high correlations with 1 week of EMA ratings. Within-subject correlations of EOD with mean daily EMA across 7 days confirmed patients' ability to provide daily ratings that accurately reflect their day-to-day variation in symptom levels. These EOD results were compared to traditional recall ratings collected in the same protocol. It was concluded (1) that EOD ratings were a better representation of EMA than were recall ratings, and (2) that EOD ratings across a reporting period can replace EMA for studies targeting average levels of pain or fatigue.PerspectiveThis study in chronic pain patients demonstrated that end-of-day ratings of pain are highly accurate representations of average levels of pain experience across a day; ratings of fatigue were somewhat less accurate, though still at a level that would be valid.     

A Psychometric Evaluation of Three Pain Rating Scales for People with Moderate to Severe Dementia

Little comparative information exists regarding the reliability and validity of pain rating scales for nurses to assess pain in people with moderate to severe dementia in residential aged care facilities. The objective of this study was to evaluate the relative psychometric merits of the Abbey Pain Scale, the DOLOPLUS-2 Scale, and the Checklist of Nonverbal Pain Indicators Scale, three well-known pain rating scales that have previously been used to assess pain in nonverbal people with dementia. An observational study design was used. Nurses (n = 26) independently rated a cross-section of people with moderate to severe dementia (n = 126) on two occasions. The Abbey Pain Scale and the DOLOPLUS-2 Scale showed good psychometric qualities in terms of reliability and validity, including resistance to the influence of rater characteristics. The Checklist of Nonverbal Pain Indicators Scale also had reasonable results but was not as psychometrically strong as the Abbey Pain Scale and DOLOPLUS-2 Scale. This study has provided comparative evidence for the reliability and validity of three pain rating scales in a single sample. These scales are strong, objective adjuncts in making comprehensive assessments of pain in people who are unable to self-report pain due to moderate to severe dementia, with each having their own strengths and weaknesses. The DOLOPLUS-2 Scale provides more reliable measurement, and the Abbey Pain Scale may be better suited than the other two scales for use by nurse raters who only occasionally use pain rating scales or who have lower level nursing qualifications.     

Does item overlap render measured relationships between pain and challenging behaviour trivial? Results from a multicentre cross‐sectional study in 13 German nursing homes

Several studies suggest that pain is a trigger for challenging behaviour in older adults with cognitive impairment. However, such measured relationships might be confounded due to item overlap as instruments share similar or identical items. The purpose of this study was to examine whether the frequently observed association between pain and challenging behaviour might be traced back to item overlap. This multicentre cross‐sectional study was conducted in 13 nursing homes and examined pain (measure: Pain Assessment in Advanced Dementia Scale) and challenging behaviour (measure: Cohen‐Mansfield Agitation Inventory) in 150 residents with severe cognitive impairment. The extent of item overlap was determined by juxtaposition of both measures’ original items. As expected, comparison between these instruments revealed an extensive item overlap. The statistical relationship between the two phenomena can be traced back mainly to the contribution of the overlapping items, which renders the frequently stated relationship between pain and challenging behaviour trivial. The status quo of measuring such associations must be contested: constructs’ discrimination and instruments’ discrimination have to be discussed critically as item overlap may lead to biased conclusions and assumptions in research as well as to inadequate care measures in nursing practice.     

Validation of the Short-Form McGill Pain Questionnaire-2 in Younger and Older People With Cancer Pain

Pain is among the most common symptoms of cancer. Because cancer can occur at any age, it is imperative that pain assessment tools are valid for use across the adult lifespan. The Short-Form McGill Pain Questionnaire–2 (SF-MPQ-2) is a valid and reliable tool for the assessment of the multidimensional qualities of pain in people with chronic nonmalignant pain, but its psychometric properties in people with cancer pain and in older versus younger people require investigation. This study evaluated age differences in the validity, reliability, and use of the SF-MPQ-2 in 244 people with advanced cancer and pain. We confirmed the previously reported 4-factor solution in older (≥60 years) and younger (<60 years) patients. Internal consistency reliability and convergent validity were similar across age groups, although the SF-MPQ-2 sensory subscales were correlated with mental health quality of life in older, but not younger, patients. Older and younger patients selected the same words with the same intensity to describe their pain. The most commonly selected words in both age groups were aching, tiring-exhausting, sharp, and dull. These results demonstrate that the SF-MPQ-2 is appropriate for use across the adult lifespan in people with cancer pain.PerspectiveThis study demonstrated that the SF-MPQ-2 is valid for use in older and younger people with advanced cancer and pain. This measure could improve cancer pain assessment across the adult lifespan, which may lead to improved pain management.