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Pain Characteristics and Pain Control in European Nursing Homes: Cross-sectional and Longitudinal Results From the Services and Health for Elderly in Long TERm care (SHELTER) Study
JAMDA 14 (2013) 421e428
JAMDA journal homepage: www.jamda.com
Original Study
Pain Characteristics and Pain Control in European Nursing Homes: Cross-sectional and Longitudinal Results From the Services and Health for Elderly in Long TERm care (SHELTER) Study Albert Lukas MD a, *, Benjamin Mayer PhD b, Daniela Fialová PharmD c, Eva Topinkova MD c, Jacob Gindin MD d, Graziano Onder MD e, Roberto Bernabei MD e, Thorsten Nikolaus MD a, Michael D. Denkinger MD a a
AGAPLESION Bethesda Clinic, Competence Center of Geriatrics and Aging Research, University of Ulm, Germany Institute of Epidemiology and Medical Biometry, University of Ulm, Ulm, Germany Department of Geriatrics, 1st Faculty of Medicine, Charles University, Prague, Czech Republic d The Center for Standards in Health and Disability (CSHD), University of Haifa, Israel e Centro Medicina dell’Invecchiamento, Università Cattolica Sacro Cuore, Rome, Italy b c
a b s t r a c t Keywords: Pain prevalence intensity control characteristics European nursing home residents long term care facilities
Objective and Design: Few studies have compared cross-national characteristics of residents with pain in European long term care facilities. The SHELTER project, a cross-national European study on nursing home residents, provides the opportunity to examine this issue. The present study aimed to evaluate key figures about pain and compare them with seven European countries and Israel. Setting, Participants, and Measurements: A total of 3926 nursing home residents were assessed by the interRAI instrument for Long Term Care Facilities (interRAI LTCF). Prevalence of pain, frequency, intensity, consistency, and control were estimated and compared cross-nationally. Correlates between patientrelated characteristics and inadequate pain management were tested using bivariate and multivariate logistic regression models. Results: Overall, 1900 (48.4%) residents suffered from pain. Pain prevalence varied significantly among countries, ranging from 19.8% in Israel to 73.0% in Finland. Pain was positively associated with female gender, fractures, falls, pressure ulcers, sleeping disorders, unstable health conditions, cancer, depression, and number of drugs. It was negatively associated with dementia. In a multivariate logistic regression model, all associations remained except for sleeping disorders. Clinical correlations varied considerably among countries. Although in 88.1% of cases, pain was self-rated by the residents as sufficiently controlled, in only 56.8% of cases was pain intensity self-rated as absent or mild. Pain control and intensity improved within 1 year. Conclusion: Pain prevalence is high and varies considerably across Europe. Although most residents considered pain as adequately controlled, a closer look confirmed that many still suffer from high pain intensities. Analyzing the reasons behind these differences may help to improve pain management. Copyright Ó 2013 - American Medical Directors Association, Inc.
Pain is common in nursing home residents and is often underreported, underassessed, and consequently undertreated.1e4 Depending on a specific patient’s characteristics or assessment instruments, it is estimated that 45% to 80% of nursing home residents suffer from substantial pain.5e9 Because of the high vulnerability of older people, pain substantially decreases daily activities (ADLs) and reduces quality of life, which in turn leads to higher health care costs.7,10e12 This study was funded by the EU 7th Framework Programme. * Address correspondence to Albert Lukas, MD, Oberarzt, Internist, Neurologe, Geriater, Palliativmediziner, Stipendiat Forschungskolleg Geriatrie, Robert Bosch Stiftung, AGAPLESION Bethesda Klinik Ulm, Akademisches Krankenhaus Universität Ulm, Zollernring 26e28, 89073 Ulm, Germany. E-mail address: [email protected] (A. Lukas).
Therefore, improving pain management, particularly in long term care facilities, should be considered as a high priority for health care services. A prerequisite for improvement is to understand patterns of pain and factors that may influence its onset and treatment. Much is known about pain characteristics in individual countries,7,13,14 but until now, except for a comparison study on community-dwelling elderly15 and two nursing home studies,16,17 comparable transcontinental assessment tools were missing. Hardly any data have been aggregated at a European level. In the first of these two cross-national nursing home studies, pain prevalence was compared in nursing home facilities of four Scandinavian countries.16 In this study, 22% to 24% of the residents experienced daily pain. This was very evident in the severely disabled subjects.
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A. Lukas et al. / JAMDA 14 (2013) 421e428
Disability, female gender, terminal prognosis, osteoporosis, pneumonia, arthritis, depression, anemia, peripheral vascular disease, cancer, and cardiac heart failure were independently associated with pain. A negative association was seen between pain and severe cognitive impairment. The other, a recently published study from Achterberg et al,17 compared patterns of pain in three countries: Finland, the Netherlands, and Italy. The prevalence of pain varied from 32% in Italy, to 43% in the Netherlands, and 57% in Finland. In 50% of cases, pain was present daily. In more than 50% of the cases, pain was moderate to severe in all countries. Correlations with clinical parameters were comparable. As Achterberg et al17 already mentioned, longitudinal results about pain have been missing. To provide a much more comprehensive view of pain characteristics across Europe, we decided to use data from the highly standardized and well-accepted INTER-RAI instrument that has been implemented in the SHELTER project (the Services and Health for Elderly in Long TERm care).18 To fill this gap, we (1) compiled the most relevant key figures about pain, its prevalence rates, frequency, consistency, intensity, and control so as to conduct a comparison of nursing home residents across 7 European countries and Israel; (2) determined trajectories of pain intensity and control in European nursing homes; and (3) identified clinical correlates related to pain and pain management (sufficient and insufficient management) in this group of highly vulnerable older adults. Method SHELTER Study and interRAI LTCF Assessment The SHELTER study is a project funded by the Seventh Framework Programme of the European Union. The study was conducted in seven EU countries (Czech Republic, England, Finland, France, Germany, Netherlands, and Italy) and one non-EU country (Israel). In 57 nursing home facilities, a total of 4156 residents were assessed by a newly designed comprehensive assessment instrument, the interRAI instrument for Long Term Care Facilities (the interRAI LCTF), derived from the Minimum Data Set (MDS). The MDS is a comprehensive assessment instrument that contains a standardized set of essential clinical and functional status. Assessments of nursing home residents were conducted at baseline and then after 6 and 12 months respectively by study nurses recruited for the project. All nurses received a standardized 2-day training program on the concept of comprehensive geriatric assessment and how to use the interRAI LTCF assessment.18 Assessors were trained to use a variety of information sources, such as direct observation; interviews with person under care, family, friends, or formal service providers; and review of clinical records. The aim of the SHELTER study was, on the one hand, to validate the interRAI LCTF as methodology to assess provision of care in European nursing homes and, on the other, to implement this instrument over a large number of different European countries and to create a database as a basis for comparison across countries. Data were collected by study researchers trained following a previously validated procedure. In each country, courses were organized to inform the assessors about the concepts of comprehensive geriatric assessment and multidisciplinary teamwork and to train them to the use of interRAI LTCF. In line with interRAI’s standard approach to coding, study researchers were all instructed to exercise their best clinical judgment so as to record observations based on their evaluation of the most accurate information source. Pain Assessment Pain characteristics were assessed using evaluations of the study nurses. Information was gathered directly from interviews with the
residents. The responsible carer was used as a proxy if no reliable answer from the resident could be obtained. The assessors were instructed to ask simple and direct questions about whether the resident experienced pain. Because some participants could not verbally complain, study nurses were also instructed to recognize possible nonverbal indicators of pain, such as facial expressions, moaning, groaning, or protecting an area of the body. The interRAI LTCF has 4 grades for determining pain frequency: no pain, pain present but not in the past 3 days, present on 1 to 2 of the past 3 days, and present daily in the past 3 days. Residents were determined as suffering from pain if they responded at least that pain was “present but not in last 3 days before assessment” and/or receiving analgesics. Consistency of pain was measured on a 4-point scale: no pain, single episode, intermittent, and constant pain. Breakthrough pain was documented as present or absent during the past 3 days before assessment. Pain control (or adequacy of current therapeutic regime to control pain from the patient’s point of view) was measured using 6 levels: 1, no pain; 2, pain intensity acceptable, no therapy or change in therapy required; 3, adequately controlled through pain therapy; 4, adequately controlled when following therapy plan, although this is not always done; 5, therapy plan is being followed but pain control is insufficient; and 6, no therapy plan, pain control insufficient. Maximal current pain intensity was measured on a 5-point Likert scale: none, mild, moderate, severe, and unbearable pain. Test-retest and interrater reliability of pain variables used in the SHELTER database ranged from adequate to excellent (kappa statistics 0.81 and 0.70, respectively).19 Covariates To evaluate functional status, the 7-point MDS-ADL Hierarchy scale was used.20 This scale groups ADLs according to the stage of the disablement process in which they occur. Lower scores represent earlier loss of ADLs, higher scores represent later loss of ADLs. The ADL scale ranges from 0 (no impairment) to 6 (total dependence). ADL disability was categorized as follows: assistance required (ADL Hierarchy Scale score 2 to 4) and dependence (ADL Hierarchy Scale score 5). Fractures, either of the hip or of other areas of the body, were combined into one variable. Falls were defined as a sudden loss of balance resulting in the contact of any part of the body above the feet with the floor occurring in the 90 days before the assessment. Regarding pressure ulcers, the most severe stage was documented. Sleeping disorders were defined as difficulty falling asleep or staying asleep, waking up too early, restlessness, or nonrestful sleep. Instability of conditions was defined as conditions/diseases making cognitive, ADL, mood, or behavior patterns unstable (fluctuating, precarious, or deteriorating) and can be seen as an estimation of the overall status. Clinical diagnoses were recorded by the study nurse who collected information from patients, general practitioners, and clinical records according to a checklist in the interRAI. Dementia, either Alzheimer disease or any other type of dementia, were combined into one variable. To assess depressive symptoms, the MDS Depression Rating Scale was used. A score greater than two indicates depression.21 The scale performs well when tested against interview-based instruments and even outperformed the Geriatric Depression Scale when tested against psychiatric diagnoses.21 Number of drugs represents the total number of prescribed drugs of the individual resident. Ethical approval for the study was obtained in all countries according to local regulations. Residents of the participating facilities, or
A. Lukas et al. / JAMDA 14 (2013) 421e428
their legal guardian in case of legal incapacity, were asked after comprehensive information was provided them to participate in the study and to give their informed consent. There were no exclusion criteria. Statistical Analysis From the original 4156 residents, those with missing or insufficient data about pain (n ¼ 230) were excluded, leading to a final study population of 3926 participants. For the analysis, cross-sectional and, regarding control and intensity of pain, additional longitudinal data (assessment at baseline, after 6 and 12 months, respectively) of the SHELTER database were used. Comparisons of data are presented through descriptive statistical parameters as absolute and relative frequencies, median/mean, and SD. After dichotomization, characteristics of nursing home residents with and without pain were compared. Pain prevalence was derived from the combination of pain frequency (at least present but not in the past 3 days) and/or current pain medication (continuous medication or medication on an asneeded basis [PRN]). For further analysis, only the group of residents suffering from pain (n ¼ 1900) was used to evaluate pain frequency, consistency, and breakthrough pain, as well as control and intensity of pain. Self-rated pain control and pain intensity were compared with each other, including their trajectories. Values of pain control were derived as a general conclusion of the resident about adequacy of current therapeutic regimen to control pain. Therefore, the 6 levels of pain control were dichotomized in pain adequately controlled (1, no pain; 2, pain intensity acceptable, no therapy or change in therapy required; 3, adequately controlled through pain therapy; 4, adequately controlled when following therapy plan, although this is not always done) and insufficiently controlled (5, therapy plan is being followed but pain control is insufficient; 6, no therapy plan, pain control insufficient). Intensity of pain was dichotomized in sufficiently (none or mild pain) and insufficiently managed (moderate, severe, or unbearable pain). The data were analyzed for the whole cohort and separately for each country to provide an adequate estimate of the associations. Statistical testing was carried out using chi-square and Kruskal-Wallis tests in all countries, including subgroups. Because of the large sample size, a significance level of 1% was used. No adjustment for multiple testing was done because of the observational character of the study. To explore the associations of pain with possible confounders like, for example, dementia or depression, bivariate logistic regression models were used. Only variables below the significance level of 1% in the bivariate analyses were considered for a multivariate logistic regression model. All analyses were performed by using SPSS version 20.0 (IBM SPSS Statistics, Armonk, New York) for Windows version 20.0. Results Sample Characteristics Characteristics of the study population are summarized in Table 1. Mean age of the 3926 participants was 83.6 (9.3) years, and 2876 (73.3%) were women. Of the total sample, 1900 residents (48.4%) could be defined as people suffering from pain according to the previously mentioned criteria. Of these, 838 (21.3%) had pain within the past 3 days before assessment. People suffering from pain suffer significantly less often from dementia (P < .001). Fractures, falls, severe pressure ulcers, sleeping disorders, unstable health conditions, cancers, and depression were significantly more frequent in residents
423
with pain (P < .001). The number of drugs prescribed was also significantly higher. The basic characteristics showed substantial differences in individual countries (Table 2). For example, the prevalence of pain ranged from 19.8% in Israel to 73.0% in Finland. Residents in England tended to be more dependent (62.5%) in terms of ADLs than those in Germany or the Netherlands. Dementia in England (36.4%) and the Netherlands (41.0%) was noticeably less often diagnosed than in Finland (66.3%) or Israel (67.8%). Fractures in Germany were considerably less frequent (0.8%) than in other countries (average: 3.8%) and were most often recorded in the Netherlands (9.2%). Prevalence of pain across the European countries showed substantial differences (Table 2). The prevalence in Israel and Italy was significantly (P < .001) lower and in Finland significantly higher than the average prevalence of pain (total sample) in the European countries. Pain Medication Of those suffering from pain, 76.3% received an analgesic: 52.6% on a regular basis, 13.9% on a regular basis plus PRN, and 9.8% only as PRN; 23.7% were not given any analgesics. Types of analgesic prescribed: World Health Organization (WHO) I-level 62.5%, WHO IIlevel 7.8%, and WHO III-level 9.7%. Combination therapy (WHO I together with II or III) was found in 20.1% of the cases. Pain Characteristics Finland, England, and the Czech Republic were at the extremes in terms of pain frequency (Table 3). Pain frequency in the Czech Republic was significantly higher (P < .001) within the past 3 days before assessment when compared with the total pain sample. In England and Finland, pain frequency was lower when compared with the total pain sample, but did not reach a significant level (P ¼ .013 or P ¼ .027 respectively). In terms of pain consistency, the prevalence of residents with current pain (¼ pain within the past 3 days before assessment, either as single, intermittent, or constant episodes) was documented to be
Table 1 Characteristics of Study Population Divided According to Pain and No Pain No Pain Pain P n ¼ 2026 (%) n ¼ 1900 (%) Age, y, mean SD Female gender ADL disability* Assistance required Dependent Fractures Falls Pressure ulcers Sleeping disorders Unstable health conditions Diseases Cancers Ischemic heart disease Congestive heart failure Stroke Diabetes Chronic obstructive pulmonary disease Depression Dementia No. drugs, mean SD
83.3 9.5 1439 (71.0)
83.9 8.9 1437 (75.6)
.05 (T-Test) .001
864 802 41 328 151 237 466
(42.7) (39.6) (2.0) (16.4) (7.5) (11.7) (23.0)
774 756 109 410 258 296 574
(40.8) (39.8) (5.7) (21.6) (13.7) (15.6) (30.3)
<.001 <.001 <.001 <.001 <.001
181 532 338 453 465 195
(8.9) (26.3) (16.7) (22.4) (23.0) (9,6)
247 501 363 415 395 169
(13.0) (26.6) (19.2) (21.9) (20.9) (8.9)
<.001 .84 .04 .74 .12 .45
521 (26.3) 1234 (60.9) 6.2 3.1
727 (38.5) 872 (45.9) 8.4 3.6
.47
<.001 <.001 <.001 (T-Test)
ADL, activities of daily living. *Assistance required is defined by ADL hierarchical scale score 2 to 4, dependent by ADL hierarchical scale score 5 to 6.
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A. Lukas et al. / JAMDA 14 (2013) 421e428
Table 2 Characteristics of Study Population in Total and Divided into Individual Countries
Age, y, mean SD Female gender Pain ADL disability* Assistance required Dependent Depression Dementia Fractures Falls Prior pressure ulcers Cancer
Total sample n ¼ 3926 (%)
Czech Republic n ¼ 499 (%)
Germany n ¼ 472 (%)
England n ¼ 473 (%)
Finland n ¼ 481 (%)
France n ¼ 490 (%)
Israel n ¼ 566 (%)
Italy n ¼ 457 (%)
Netherlands n ¼ 488 (%)
83.6 9.3 2876 (73.3) 1900 (48.4)
81.3 8.3 362 (72.5) 277 (55.5)
84.6 8.2 373 (79.0) 245 (51.9)
84.6 9.5 338 (71.5) 258 (54.5)
84.8 8.0 360 (74.8) 351 (73.0)
87.4 7.8 373 (76.1) 288 (58.8)
81.3 10.9 404 (71.4) 112 (19.8)
84.4 8.3 373 (73.7) 105 (23.0)
81.0 10.4 329 (67.4) 264 (54.1)
1638 1558 1248 2106 150 738 409 428
160 203 145 240 36 131 79 69
263 115 102 243 4 111 46 49
127 291 154 172 16 71 52 55
290 129 170 319 17 101 23 32
154 229 170 283 10 95 58 86
192 284 164 384 8 58 37 40
199 191 155 265 14 64 62 30
253 116 188 200 45 107 52 67
(41.8) (39.7) (32.2) (53.6) (3.8) (19.0) (10.4) (10.9)
(32.1) (40.7) (29.3) (48.1) (7.2) (26.3) (15.8) (13.8)
(55.7) (24.4) (21.6) (51.5) (0.8) (23.5) (9.7) (10.4)
(26.8) (62.5) (32.6) (36.4) (3.4) (15.1) (11.0) (11.6)
(60.9) (27.1) (35.9) (66.3) (3.5) (21.2) (4.7) (6.7)
(31.4) (46.7) (34.7) (57.8) (2.0) (19.4) (11.8) (17.6)
(33.9) (50.2) (30.1) (67.8) (1.4) (10.8) (6.5) (7.1)
(43.5) (41.8) (35.6) (58.0) (3.1) (14.0) (13.6) (6.6)
(51.8) (23.8) (38.5) (41) (9.2) (21.9) (10.7) (13.7)
ADL, activities of daily living. *Assistance required is defined by ADL hierarchical scale score 2 to 4, dependent by ADL hierarchical scale score 5 to 6.
the lowest in Finland (P ¼ .014) and highest in the Czech Republic and the Netherlands (P < .001). Dutch nursing home residents had a higher percentage of intermittent pain episodes (P < .001), and Czech residents had a higher percentage of constant pain sufferers (P < .001), as did Italian residents (P < .001). Regarding single pain episodes, German residents scored the most often, whereas the French residents rated the least often. Breakthrough pain was relatively rare. Only 7.3% of all pain sufferers reported this type of pain, with Italy as the country with the highest percentage (18.1%). Data on pain control and intensity are presented in Figure 1. Pain control, as an overall estimation about adequacy of current therapeutic regimen to control pain reported by the residents or rated by the carers, was given a good rating. Compared with the total pain sample, pain in England was better controlled (P ¼ .004) and in the Czech Republic pain was less well controlled (P ¼ .002). In general, when residents were asked whether their pain was sufficiently controlled, most pain sufferers responded in the affirmative. Only 12% reported that their pain was not being controlled. In contrast to this, pain intensity was estimated to be considerably worse (Figure 1). In only 56.8% was pain estimated as sufficiently managed (no or mild pain). Pain intensity was estimated to be significantly better (P .001) in Germany and Finland, whereas in Israel and the Netherlands it was rated worse (P .001) compared with the total sample. A comparison of pain control (amount of pain, adequately controlled) and pain intensity (amount of no or mild pain) trajectories is presented in Figure 2. Adequacy of self-rated pain control, as well as the amount of self-rated sufficiently managed pain intensity in the total pain sample improved during the observational period of 1 year. During the 1-year follow-up, 1132 (59.6%) of the 1900 participants with pain were lost to follow-up; 768 (40.4%) participants
completed all three assessments. From those who were lost to follow-up, 362 (19.1%) residents died during the year, 187 (9.8%) residents were discharged to other facilities or returned home, and in 583 (30.7%) of the cases no detailed information about the reason for loss to follow-up was available. In relation to baseline, dropouts were statistically significantly (P .01) more likely to be of male gender and had significantly more falls and fractures, received more drugs, and more often had an unstable health condition compared with those who completed all three assessments. Strokes occurred significantly less often in the group of dropouts. At baseline, there were no statistically significant differences in terms of pressure ulcers, sleeping disorders, cancer, ischemic heart disease, congestive heart failure, diabetes, chronic obstructive pulmonary disease, depression, or dementia in those who withdrew from the study compared with those who completed the study. Multivariate Logistic Regression Models Table 4 displays the clinical correlates of pain in total and across the 8 countries. In multivariate logistic regression models, clinical correlates of pain were very different in detail. Pain was positively correlated (total pain sample) with female gender and diagnosis of fracture, cancer, falls, unstable health conditions, severe pressure ulcers, and clinical depression. On a country level, depression (Czech Republic, England, Finland, France, and Italy) and severe pressure ulcers (England, France, and the Netherlands) were most frequently correlated with the diagnosis of pain. Associations with falls and unstable health conditions could be shown only for Italy, whereas an association with cancer was significant only for the Netherlands. Diagnosis of dementia was negatively associated with pain in the total pain sample, as well as in the Czech Republic, England, France, Israel, Italy, and the Netherlands.
Table 3 Pain Characteristics in Total Pain Sample and Divided into Individual Countries
Frequency Present, not past 3 days Present 1e2 of past 3 days Present past 3 days Consistency Single episode Intermittent Constant Breakthrough
Total Pain Sample n ¼ 1900 (%)
Czech Republic n ¼ 277 (%)
Germany n ¼ 245 (%)
England n ¼ 258 (%)
Finland n ¼ 351 (%)
France n ¼ 288 (%)
Israel n ¼ 112 (%)
Italy n ¼ 105 (%)
Netherlands n ¼ 264 (%)
1062 (55.9) 318 (16.7) 520 (27.4)
125 (45.1)* 43 (15.5)* 109 (39.4)*
148 (60.4) 39 (15.9) 58 (23.7)
164 (63.6) 26 (10.1) 68 (26.4)
214 (61.0) 65 (18.5) 72 (20.5)
167 (58.0) 37 (12.8) 84 (29.2)
62 (55.4) 28 (25.0) 22 (19.6)
56 (53.3) 23 (21.9) 26 (24.8)
126 (47.7) 57 (21.6) 81 (30.7)
16 148 21 28
21 156 18 25
8 145 29 11
11 63 11 8
18 41 23 19
8 181 23 21
164 944 224 139
(8.6) (49.7) (11.8) (7.3)
15 146 57 11
(5.4)* (52.7)* (20.6)* (4.0)
*Significant difference compared with total pain sample (P < .01).
67 64 42 16
(27.3)* (26.1)* (17.1)* (6.5)
(6.2) (57.4) (8.1) (10.9)
(6.0) (44.4) (5.1) (7.1)
(2.8)* (50.3)* (10.1)* (3.8)
(9.8) (56.3) (9.8) (7.1)
(17.1)* (39.0)* (21.9)* (18.1)*
(3.0)* (68.6)* (8.7)* (8.0)
A. Lukas et al. / JAMDA 14 (2013) 421e428
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Fig. 1. Comparisons of pain control (adequately controlled) and pain intensity (none or mild pain) in total and divided into different countries. *Significant difference compared with total pain sample (P < .01). **Pain control (adequately controlled): derived from general conclusions, “Pain controldadequacy of current therapeutic regimen to control pain.” ***Pain intensity (none or mild pain): derived from intensity measurements of pain, “Intensity of highest level of pain in the previous 3 days.”
Clinical correlates of pain intensity (insufficiently controlled pain intensity) in total and across all participating countries are displayed in Table 5. Regarding the total pain sample, falls, severe pressure ulcers, and depression were positively associated with insufficient pain management, whereas dementia was negatively correlated. On a country level, significant correlations were seen in only two countries: the Czech Republic (depression) and France.22 Discussion This cross-sectional comparison of long term care facilities addresses one of the most important quality-of-life indicators and
Fig. 2. Comparisons of pain control (adequately controlled) and pain intensity (none or mild) trajectories in total, longitudinal results (n ¼ 768). *Significant difference compared with initial pain sample (P .001). **Pain control (amount of pain, adequately controlled): derived from general conclusions, “Pain controldadequacy of current therapeutic regimen to control pain.” ***Pain intensity (amount of none or mild pain): derived from intensity measurements of pain, “Intensity of highest level of pain in the previous 3 days.”
influence factors on function for residents: pain.4 For the first time, the interRAI LTCF assessment allows a comprehensive European-wide evaluation of residents’ pain in long term care facilities and can be used to identify differences among European countries so as to improve the quality of care. Our study shows that pain is still a common condition among older adults living in European long term care facilities. Altogether, almost half of the participating residents (48.4%) experienced pain to some extent. This is in line with other authors who found comparable prevalence rates.5,6,23 Previous studies have shown that pain prevalence rates in nursing home populations reached up to 83%.12e14,24e27 A recent review by Takai et al9 found a prevalence rate among nursing home residents between 3.7% and 79.5%, depending on research methods and data sources used to detect pain. The highest prevalence rates were seen in residents’ self-reports (60%e70%), followed by chart reviews, such as the MDS (up to 64%) and observational methods (47%).9,28 Even the selection of a certain data source means determination of a specific observational period that has an impact on the diagnosis of pain. The longer the observation period, the higher the prevalence rate.9 Although residents’ self-reports usually represent a period of a few days, observational tools typically cover just a few minutes. Compared with other assessments, the interRAI LTCF reflects a relatively short evaluation period of just 3 days. Thus, the short period could compensate, on the one hand, for memory problems in the case of cognitive impairment but, on the other, lead to an underdiagnosis of pain. Prevalence rates are also influenced by whether daily pain or pain at a certain moment (only 1 day during a given period) was measured. Studies using daily pain as a criterion usually found lower prevalence rates.16 Against this background, Zwakhalen et al6 pointed out that pain prevalence rates in nursing home residents should be interpreted with caution. Therefore, we have to be aware that the use of the interRAI LCTF will influence the prevalence rate of pain. However, this easy-to-use and stable questionnaire allows for comparison across countries. Here, the prevalence of pain varies
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Table 4 Clinical Correlates of Pain, in Total and Divided into Different Countries in a Multivariate Logistic Regression Model* Total
Age Female gender Fracture Cancer Falls Unstable health condition Severe pressure ulcers Depression Dementia
Czech Republic
Germany
England
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
Finland adjOR
99% CI
adjOR
France 99% CI
adjOR
Israel 99% CI
adjOR
Italy 99% CI
adjOR
Netherlands 99% CI
1.01 1.29 2.56 1.47 1.28 1.34
1.00e1.02 1.05e1.58 1.54e4.26 1.11e1.95 1.02e1.61 1.09e1.64
1.00 1.48 2.53 1.33 1.15 1.18
0.97e1.03 0.84e2.61 0.83e7.75 0.64e2.80 0.64e2.08 0.61e2.28
1.02 1.47 2.85 1.14 0.85 1.34
0.98e1.05 0.79e2.74 0.13e63.89 0.51e2.55 0.47e1.52 0.62e2.87
1.04 1.22 2.44 1.85 0.91 0.74
1.01e1.07 0.67e2.20 0.49e12.26 0.80e4.28 0.44e1.91 0.38e1.43
1.02 0.80 2.65 0.59 1.04 1.54
0.98e1.06 0.40e1.61 0.35e20.00 0.20e1.72 0.50e2.14 0.85e2.80
0.97 1.58 5.81 1.35 0.98 0.83
0.94e1.00 0.85e2.93 0.35e96.48 0.68e2.67 0.51e1.89 0.39e1.75
0.99 0.93 3.69 1.00 1.56 0.59
0.97e1.02 0.49e1.77 0.43e32.10 0.31e3.24 0.63e3.86 0.28e1.25
0.99 1.50 2.11 1.33 3.46 2.15
0.95e1.03 0.69e3.24 0.35e12.62 0.40e4.44 1.53e7.82 1.04e4.46
1.00 1.32 2.39 2.54 1.13 1.50
0.97e1.03 0.77e2.29 0.92e6.17 1.15e5.60 0.61e2.13 0.87e2.61
2.03 1.69 0.52
1.51e2.72 1.40e2.05 0.44e0.63
1.42 2.25 0.42
0.71e2.83 1.28e3.96 0.25e0.70
2.04 1.58 0.98
0.86e4.82 0.86e2.90 0.60e1.60
3.22 2.28 0.33
1.23e8.40 1.24e4.19 0.19e0.58
1.31 2.19 0.80
0.29e5.89 1.11e4.32 0.41e1.56
5.16 2.12 0.44
1.89e14.07 1.19e3.77 0.26e0.75
2.54 1.52 0.45
0.92e7.02 0.82e2.83 0.24e0.84
1.53 2.54 0.49
0.62e3.78 1.34e4.85 0.25e0.97
3.05 1.54 0.49
1.21e7.64 0.87e2.72 0.28e0.83
Table 5 Clinical Correlates of Insufficiently Controlled Pain Intensity (Moderate to Unbearable Pain Intensity) in the Previous 3 Days, in Total and Divided into Different Countries in a Multivariate Logistic Regression Model* Total
Age Female gender Fracture Cancer Falls Unstable health condition Severe pressure ulcers Depression Dementia
Czech Republic
Germany
England
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
adjOR
Finland 99% CI
adjOR
France 99% CI
0.98 0.97 0.74 1.21 1.38 1.22 1.45 1.57 0.61
0.97e.1.00 0.72e1.30 0.43e1.29 0.84e1.74 1.02e1.88 0.92e1.62 1.01e2.08 1.21e2.04 0.47e0.79
0.97 1.08 0.37 0.96 0.95 1.72 1.18 2.86 0.49
0.93e1.01 0.49e2.35 0.10e1.30 0.39e2.42 0.43e2.06 0.73e4.09 0.48e2.87 1.39e5.91 0.24e1.02
0.99 0.96 1.21 2.33 0.86 1.54 0.94 1.24 0.56
0.94e1.04 0.35e2.62 0.04e39.78 0.74e7.32 0.35e2.11 0.52e4.58 0.31e2.89 0.53e2.91 0.27e1.18
1.00 0.60 0.57 1.27 1.75 0.96 1.35 1.03 0.85
0.96e1.05 0.27e1.35 0.10e3.33 0.49e3.30 0.67e4.61 0.40e2.30 0.54e3.37 0.49e2.16 0.38e1.89
1.00 0.90 1.61 1.21 1.69 1.59 2.29 1.84 0.79
0.95e1.04 0.41e1.98 0.33e7.87 0.32e4.61 0.79e3.63 0.80e3.17 0.55e9.44 0.92e3.65 0.39e1.62
0.99 0.68 1.13 0.81 1.23 1.12 1.53 1.89 0.42
0.95e1.03 0.31e1.50 0.17e7.44 0.35e1.83 0.53e2.87 0.46e2.72 0.64e3.67 0.97e3.66 0.22e0.80
adjOR, adjusted odds ratio; 99% CI, 99% confidence interval. Significant results are in bold. *Models were adjusted for all variables in Table 1 that were statistically significant (P < .01), except age, which was forced into the model. y OR cannot be estimated.
Israel adjOR
Italy
Netherlands
99% CI
adjOR
99% CI
adjOR
99% CI
1.02 2.34 0.23
0.97e1.07 0.65e8.41 0.00e24.09
16.88 1.65 1.20 1.71 0.66
0.85e333.92 0.34e7.87 0.19e7.53 0.51e5.74 0.21e2.14
0.99 0.74 0.38 1.07 3.65 1.45 1.26 1.67 0.59
0.92e1.07 0.19e2.94 0.03e4.95 0.15e7.94 0.95e14.02 0.43e4.90 0.28e5.62 0.52e5.36 0.18e1.94
0.97 1.38 0.52 0.68 1.47 1.37 1.86 0.78 0.95
0.94e1.01 0.65e2.93 0.17e1.59 0.28e1.65 0.63e3.44 0.63e2.98 0.69e5.00 0.35e1.71 0.45e2.01
y
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adjOR, adjusted odds ratio; 99% CI, 99% confidence interval. Significant results are in bold. *Models were adjusted for all variables in Table 1 that were statistically significant (P < .01), except age, which was forced into the model.
A. Lukas et al. / JAMDA 14 (2013) 421e428
significantly among countries, ranging from 19.8% (Israel) to 73.0% (Finland). Comparable differences were reported from the AdHOC project,15 which, in contrast to the present study, addressed community-dwelling elderly receiving home care services. Apart from the AdHOC study, other studies also found considerable interbut also intracountry differences.6,9,16,17,23 Regional differences in nursing home admission criteria might be one possible explanation of our results. This might be supported by the differences observed in people suffering from dementia within the individual countries in the present study, ranging from 36.4% to 67.8%, with an average percentage of 54.0%. Also, differences in settings and case mix might be possible explanations for our results.29 Because of the problem of underdiagnosing dementia in long term care facilities, the number of people suffering from dementia can probably be assumed to be even higher in reality30; however, there is some controversy about the influence of cognitive impairment/dementia on pain prevalence. Some authors concluded that cognitive status does not affect pain prevalence,31 whereas others found some influence.26 Furthermore, others found a significantly lower rate of pain prevalence among residents with higher levels of cognitive impairment.23,32,33 According to Zyczkowska et al,33 we found a negative relationship between impaired cognition and pain detection. Hence, impaired cognition seems to have a clear impact on pain recognition, even if there is no difference in pain-related diagnoses.3,13 This could be primarily because of difficulties in verbal communication. As dementia progresses, the ability of pain sufferers to verbally communicate their pain is often compromised, complicating the task of recognizing pain. During the implementation of the interRAI LTCF, we tried to improve detection rates by using supplemental observational aspects for those participants who were unable to answer. Up to now, it is unclear to what extent this specification improved pain detection in severe dementia compared with common observational tools (eg, the PAINAD).34,35 However, our results seem to indicate at least difficulties in detection ability. Further studies addressing this topic could possibly answer this question. Apart from dementia, many other country-specific factors, resident-dependent factors (eg, differences in perception of pain), facility-dependent factors (eg, previous training, preexisting pain management, and standards in the facilities), and possible climatic influences36 can be discussed as being partially responsible for our observations. Fractures, falls, severe pressure ulcers, sleeping disorders, unstable health conditions, cancer, and depression, as well as the number of drugs used, were significantly more often associated with pain. Similar findings, at least in part, were found by other authors. For example, with regard to sleeping disorders, especially in cases of serious pain,12,28 cancer,16,27 and depression,15e17,26e28,33 analogous positive correlations were reported. Other authors did not find clear significant correlations; for example, fractures.17,37 Whereas the Netherlands showed a significant correlation of pain and hip fracture (odds ratio 1.59; 95% confidence interval 1.16e2.18), this was not the case with Finland and Italy. Regarding sleeping disorders,14 too, other authors had different findings. Lin et al37 could not find a significant association with falls, probably because a different population was examined (residents with severe dementia). In light of these findings, when determining and treating pain, attention also should be paid to detecting and treating these diseases or symptoms. The multivariate models showed similar positive and negative correlations between clinical characteristics of the residents and management of pain but considerable variations on a country level. Although most pathologies were positively associated, dementia was not. Furthermore, falls, severe pressure ulcers, and depression appear to be associated with inadequate pain management, whereas, once again, a diagnosis of dementia seemed to “protect” against
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insufficient pain management. Taken together, significant psychopathology (depression, dementia) seems to influence the individual pain awareness to a great extent and could partly explain the difference between self-rated pain control and pain-intensity measures. Another explanation could be that many elderly persons are convinced that pain is part of a normal aging process.38 Other researchers saw comparable satisfaction with pain treatment despite verifiable insufficient treatment.14 According to Boerlage et al,14 statements by the residents may reflect low expectations rather than appropriate pain treatment. On a positive note, it should be recorded that pain control as well as pain intensity improved after interRAI was implemented, especially within the first 6 months. This could be interpreted as another confirmation that the introduction of the assessment might have led to a significant improvement that was sustained over a further 6 months; however, from a more conservative interpretation, our findings also could be interpreted as selection- or biased-based respectively. Those who could not complete the 1-year follow-up seemed to have, at least in several characters, a significantly worse health condition compared with those who completed all 3 assessments. A more specific statement about the real reason for the effect observed was not possible through the chosen study design and has to be clarified by future studies. In total, however, our findings contribute to the current understanding that pain management is still suboptimal in many settings and highlights the need for improvement in European long term care facilities.
Limitations Our study has several limitations, which should be mentioned. Despite the comprehensive character of the interRAI LCTF, the recording of pain is not its specific focus. Pain was assessed by interviewing residents, direct observation, and proxy reports by care staff. The potential for overestimation and especially underestimation remains a concern, especially in residents suffering from dementia. In addition, we lack data on possible causes for pain and duration. Samples in SHELTER countries were not strictly selected as representative of all nursing homes in each respective country. We tried to consider as many factors as possible that may influence the results, such as city or countryside, private institutions, and church carriers.
Conclusion The SHELTER study is the first study of its kind with such a comprehensive comparison of nursing home residents across Europe. It could be shown that interRAI LTCF can be used to identify significant differences and clinical correlations regarding pain characteristics of nursing home residents across different European countries. Furthermore, the implementation of interRAI LTCF seems probably to be associated with an improvement in pain control and pain intensity. Our results confirmed that pain in long term care facilities is still a major health care problem in Europe and prevalence rates vary to a great extent. It is our hope that our findings will influence the actions of health care providers and those responsible for health care policies and allocations of resources so as to improve pain management in European long term care facilities. Pain detection and treatment requires further attention, especially in this highly vulnerable group of older people living in long term care.
Acknowledgments The authors thank Alexander Connelly and Paul East for intensively reviewing the manuscript.
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References 1. Pickering G, Jourdan D, Dubray C. Acute versus chronic pain treatment in Alzheimer’s disease. Eur J Pain 2006;10:379e384. 2. Morrison RS, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage 2000;19:240e248. 3. Reynolds KS, Hanson LC, DeVellis RF, et al. Disparities in pain management between cognitively intact and cognitively impaired nursing home residents. J Pain Symptom Manage 2008;35:388e396. 4. AGS. Pharmacological management of persistent pain in older persons. J Am Geriatr Soc 2009;57:1331e1346. 5. Won AB, Lapane KL, Vallow S, et al. Persistent nonmalignant pain and analgesic prescribing patterns in elderly nursing home residents. J Am Geriatr Soc 2004; 52:867e874. 6. Zwakhalen SM, Koopmans RT, Geels PJ, et al. The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. Eur J Pain 2009;13:89e93. 7. Torvik K, Kaasa S, Kirkevold O, et al. Pain and quality of life among residents of Norwegian nursing homes. Pain Manag Nurs 2010;11:35e44. 8. AGS. The management of persistent pain in older persons. J Am Geriatr Soc 2002;50:S205eS224. 9. Takai Y, Yamamoto-Mitani N, Okamoto Y, et al. Literature review of pain prevalence among older residents of nursing homes. Pain Manag Nurs 2010; 11:209e223. 10. Weiner DK, Hanlon JT. Pain in nursing home residents: Management strategies. Drugs Aging 2001;18:13e29. 11. Hadjistavropoulos TP, Herr KP, Turk DCP, et al. An interdisciplinary expert consensus statement on assessment of pain in older persons. Clin J Pain 2007; 23:S1eS43. 12. Zanocchi M, Maero B, Nicola E, et al. Chronic pain in a sample of nursing home residents: Prevalence, characteristics, influence on quality of life (QoL). Arch Gerontol Geriatr 2008;47:121e128. 13. Nygaard HA, Jarland M. Are nursing home patients with dementia diagnosis at increased risk for inadequate pain treatment? Int J Geriatr Psychiatry 2005;20: 730e737. 14. Boerlage AA, van Dijk M, Stronks DL, et al. Pain prevalence and characteristics in three Dutch residential homes. Eur J Pain 2008;12:910e916. 15. Onder G, Landi F, Gambassi G, et al. Association between pain and depression among older adults in Europe: Results from the Aged in Home Care (AdHOC) project: A cross-sectional study. J Clin Psychiatry 2005;66: 982e988. 16. Finne-Soveri UH, Ljunggren G, Schroll M, et al. Pain and its Association with disability in institutional long term care in four Nordic countries. Can J Aging 2000;19:38e49. 17. Achterberg WP, Gambassi G, Finne-Soveri H, et al. Pain in European long term care facilities: Cross-national study in Finland, Italy and The Netherlands. Pain 2010;148:70e74. 18. Onder G, Carpenter I, Finne-Soveri H, et al. Assessment of nursing home residents in Europe: The Services and Health for Elderly in Long TERm care (SHELTER) study. BMC Health Serv Res 2012;12:5.
19. Tosato M, Lukas A, van der Roest HG, et al. Association of pain with behavioral and psychiatric symptoms among nursing home residents with cognitive impairment: Results from the SHELTER study. Pain 2012;153: 305e310. 20. Morris JN, Fries BE, Morris SA. Scaling ADLs within the MDS. J Gerontol A Biol Sci Med Sci 1999;54:M546eM553. 21. Burrows AB, Morris JN, Simon SE, et al. Development of a minimum data setbased depression rating scale for use in nursing homes. Age Ageing 2000;29: 165e172. 22. Hort J, O’Brien JT, Gainotti G, et al. EFNS guidelines for the diagnosis and management of Alzheimer’s disease. Eur J Neurol 2010;17:1236e1248. 23. Proctor WR, Hirdes JP. Pain and cognitive status among nursing home residents in Canada. Pain Res Manag 2001;6:119e125. 24. Gibson SJ. IASP global year against pain in older persons: Highlighting the current status and future perspectives in geriatric pain. Expert Rev Neurother 2007;7:627e635. 25. Fox PL, Raina P, Jadad AR. Prevalence and treatment of pain in older adults in nursing homes and other long term care institutions: A systematic review. CMAJ 1999;160:329e333. 26. Leong IY, Nuo TH. Prevalence of pain in nursing home residents with different cognitive and communicative abilities. Clin J Pain 2007;23:119e127. 27. Sawyer P, Lillis JP, Bodner EV, et al. Substantial daily pain among nursing home residents. J Am Med Dir Assoc 2007;8:158e165. 28. Smalbrugge M, Jongenelis LK, Pot AM, et al. Pain among nursing home patients in the Netherlands: Prevalence, course, clinical correlates, recognition and analgesic treatmentdan observational cohort study. BMC Geriatr 2007;7:3. 29. Achterberg WP, Pot AM, Scherder EJ, et al. Pain in the nursing home: Assessment and treatment on different types of care wards. J Pain Symptom Manage 2007;34:480e487. 30. Singer C, Luxenberg J. Diagnosing dementia in long term care facilities. J Am Med Dir Assoc 2003;4:S134eS140. 31. Fisher SE, Burgio LD, Thorn BE, et al. Pain assessment and management in cognitively impaired nursing home residents: Association of certified nursing assistant pain report, Minimum Data Set pain report, and analgesic medication use. J Am Geriatr Soc 2002;50:152e156. 32. Torvik K, Kaasa S, Kirkevold O, et al. Pain in patients living in Norwegian nursing homes. Palliat Med 2009;23:8e16. 33. Zyczkowska J, Szczerbinska K, Jantzi MR, et al. Pain among the oldest old in community and institutional settings. Pain 2007;129:167e176. 34. Herr K, Bursch H, Ersek M, et al. Use of pain-behavioral assessment tools in the nursing home: Expert consensus recommendations for practice. J Gerontol Nurs 2010;36:18e29. quiz 30e11. 35. Basler HD, Hueger D, Kunz R, et al. Assessment of pain in advanced dementia. Construct validity of the German PAINAD. Schmerz 2006;20:519e526. 36. Breivik H, Collett B, Ventafridda V, et al. Survey of chronic pain in Europe: Prevalence, impact on daily life, and treatment. Eur J Pain 2006;10:287e333. 37. Lin PC, Lin LC, Shyu YI, et al. Predictors of pain in nursing home residents with dementia: A cross-sectional study. J Clin Nurs 2011;20:1849e1857. 38. Yates P, Dewar A, Fentiman B. Pain: The views of elderly people living in longterm residential care settings. J Adv Nurs 1995;21:667e674.
JAMDA journal homepage: www.jamda.com
Original Study
Pain Characteristics and Pain Control in European Nursing Homes: Cross-sectional and Longitudinal Results From the Services and Health for Elderly in Long TERm care (SHELTER) Study Albert Lukas MD a, *, Benjamin Mayer PhD b, Daniela Fialová PharmD c, Eva Topinkova MD c, Jacob Gindin MD d, Graziano Onder MD e, Roberto Bernabei MD e, Thorsten Nikolaus MD a, Michael D. Denkinger MD a a
AGAPLESION Bethesda Clinic, Competence Center of Geriatrics and Aging Research, University of Ulm, Germany Institute of Epidemiology and Medical Biometry, University of Ulm, Ulm, Germany Department of Geriatrics, 1st Faculty of Medicine, Charles University, Prague, Czech Republic d The Center for Standards in Health and Disability (CSHD), University of Haifa, Israel e Centro Medicina dell’Invecchiamento, Università Cattolica Sacro Cuore, Rome, Italy b c
a b s t r a c t Keywords: Pain prevalence intensity control characteristics European nursing home residents long term care facilities
Objective and Design: Few studies have compared cross-national characteristics of residents with pain in European long term care facilities. The SHELTER project, a cross-national European study on nursing home residents, provides the opportunity to examine this issue. The present study aimed to evaluate key figures about pain and compare them with seven European countries and Israel. Setting, Participants, and Measurements: A total of 3926 nursing home residents were assessed by the interRAI instrument for Long Term Care Facilities (interRAI LTCF). Prevalence of pain, frequency, intensity, consistency, and control were estimated and compared cross-nationally. Correlates between patientrelated characteristics and inadequate pain management were tested using bivariate and multivariate logistic regression models. Results: Overall, 1900 (48.4%) residents suffered from pain. Pain prevalence varied significantly among countries, ranging from 19.8% in Israel to 73.0% in Finland. Pain was positively associated with female gender, fractures, falls, pressure ulcers, sleeping disorders, unstable health conditions, cancer, depression, and number of drugs. It was negatively associated with dementia. In a multivariate logistic regression model, all associations remained except for sleeping disorders. Clinical correlations varied considerably among countries. Although in 88.1% of cases, pain was self-rated by the residents as sufficiently controlled, in only 56.8% of cases was pain intensity self-rated as absent or mild. Pain control and intensity improved within 1 year. Conclusion: Pain prevalence is high and varies considerably across Europe. Although most residents considered pain as adequately controlled, a closer look confirmed that many still suffer from high pain intensities. Analyzing the reasons behind these differences may help to improve pain management. Copyright Ó 2013 - American Medical Directors Association, Inc.
Pain is common in nursing home residents and is often underreported, underassessed, and consequently undertreated.1e4 Depending on a specific patient’s characteristics or assessment instruments, it is estimated that 45% to 80% of nursing home residents suffer from substantial pain.5e9 Because of the high vulnerability of older people, pain substantially decreases daily activities (ADLs) and reduces quality of life, which in turn leads to higher health care costs.7,10e12 This study was funded by the EU 7th Framework Programme. * Address correspondence to Albert Lukas, MD, Oberarzt, Internist, Neurologe, Geriater, Palliativmediziner, Stipendiat Forschungskolleg Geriatrie, Robert Bosch Stiftung, AGAPLESION Bethesda Klinik Ulm, Akademisches Krankenhaus Universität Ulm, Zollernring 26e28, 89073 Ulm, Germany. E-mail address: [email protected] (A. Lukas).
Therefore, improving pain management, particularly in long term care facilities, should be considered as a high priority for health care services. A prerequisite for improvement is to understand patterns of pain and factors that may influence its onset and treatment. Much is known about pain characteristics in individual countries,7,13,14 but until now, except for a comparison study on community-dwelling elderly15 and two nursing home studies,16,17 comparable transcontinental assessment tools were missing. Hardly any data have been aggregated at a European level. In the first of these two cross-national nursing home studies, pain prevalence was compared in nursing home facilities of four Scandinavian countries.16 In this study, 22% to 24% of the residents experienced daily pain. This was very evident in the severely disabled subjects.
1525-8610/$ - see front matter Copyright Ó 2013 - American Medical Directors Association, Inc. http://dx.doi.org/10.1016/j.jamda.2012.12.010
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Disability, female gender, terminal prognosis, osteoporosis, pneumonia, arthritis, depression, anemia, peripheral vascular disease, cancer, and cardiac heart failure were independently associated with pain. A negative association was seen between pain and severe cognitive impairment. The other, a recently published study from Achterberg et al,17 compared patterns of pain in three countries: Finland, the Netherlands, and Italy. The prevalence of pain varied from 32% in Italy, to 43% in the Netherlands, and 57% in Finland. In 50% of cases, pain was present daily. In more than 50% of the cases, pain was moderate to severe in all countries. Correlations with clinical parameters were comparable. As Achterberg et al17 already mentioned, longitudinal results about pain have been missing. To provide a much more comprehensive view of pain characteristics across Europe, we decided to use data from the highly standardized and well-accepted INTER-RAI instrument that has been implemented in the SHELTER project (the Services and Health for Elderly in Long TERm care).18 To fill this gap, we (1) compiled the most relevant key figures about pain, its prevalence rates, frequency, consistency, intensity, and control so as to conduct a comparison of nursing home residents across 7 European countries and Israel; (2) determined trajectories of pain intensity and control in European nursing homes; and (3) identified clinical correlates related to pain and pain management (sufficient and insufficient management) in this group of highly vulnerable older adults. Method SHELTER Study and interRAI LTCF Assessment The SHELTER study is a project funded by the Seventh Framework Programme of the European Union. The study was conducted in seven EU countries (Czech Republic, England, Finland, France, Germany, Netherlands, and Italy) and one non-EU country (Israel). In 57 nursing home facilities, a total of 4156 residents were assessed by a newly designed comprehensive assessment instrument, the interRAI instrument for Long Term Care Facilities (the interRAI LCTF), derived from the Minimum Data Set (MDS). The MDS is a comprehensive assessment instrument that contains a standardized set of essential clinical and functional status. Assessments of nursing home residents were conducted at baseline and then after 6 and 12 months respectively by study nurses recruited for the project. All nurses received a standardized 2-day training program on the concept of comprehensive geriatric assessment and how to use the interRAI LTCF assessment.18 Assessors were trained to use a variety of information sources, such as direct observation; interviews with person under care, family, friends, or formal service providers; and review of clinical records. The aim of the SHELTER study was, on the one hand, to validate the interRAI LCTF as methodology to assess provision of care in European nursing homes and, on the other, to implement this instrument over a large number of different European countries and to create a database as a basis for comparison across countries. Data were collected by study researchers trained following a previously validated procedure. In each country, courses were organized to inform the assessors about the concepts of comprehensive geriatric assessment and multidisciplinary teamwork and to train them to the use of interRAI LTCF. In line with interRAI’s standard approach to coding, study researchers were all instructed to exercise their best clinical judgment so as to record observations based on their evaluation of the most accurate information source. Pain Assessment Pain characteristics were assessed using evaluations of the study nurses. Information was gathered directly from interviews with the
residents. The responsible carer was used as a proxy if no reliable answer from the resident could be obtained. The assessors were instructed to ask simple and direct questions about whether the resident experienced pain. Because some participants could not verbally complain, study nurses were also instructed to recognize possible nonverbal indicators of pain, such as facial expressions, moaning, groaning, or protecting an area of the body. The interRAI LTCF has 4 grades for determining pain frequency: no pain, pain present but not in the past 3 days, present on 1 to 2 of the past 3 days, and present daily in the past 3 days. Residents were determined as suffering from pain if they responded at least that pain was “present but not in last 3 days before assessment” and/or receiving analgesics. Consistency of pain was measured on a 4-point scale: no pain, single episode, intermittent, and constant pain. Breakthrough pain was documented as present or absent during the past 3 days before assessment. Pain control (or adequacy of current therapeutic regime to control pain from the patient’s point of view) was measured using 6 levels: 1, no pain; 2, pain intensity acceptable, no therapy or change in therapy required; 3, adequately controlled through pain therapy; 4, adequately controlled when following therapy plan, although this is not always done; 5, therapy plan is being followed but pain control is insufficient; and 6, no therapy plan, pain control insufficient. Maximal current pain intensity was measured on a 5-point Likert scale: none, mild, moderate, severe, and unbearable pain. Test-retest and interrater reliability of pain variables used in the SHELTER database ranged from adequate to excellent (kappa statistics 0.81 and 0.70, respectively).19 Covariates To evaluate functional status, the 7-point MDS-ADL Hierarchy scale was used.20 This scale groups ADLs according to the stage of the disablement process in which they occur. Lower scores represent earlier loss of ADLs, higher scores represent later loss of ADLs. The ADL scale ranges from 0 (no impairment) to 6 (total dependence). ADL disability was categorized as follows: assistance required (ADL Hierarchy Scale score 2 to 4) and dependence (ADL Hierarchy Scale score 5). Fractures, either of the hip or of other areas of the body, were combined into one variable. Falls were defined as a sudden loss of balance resulting in the contact of any part of the body above the feet with the floor occurring in the 90 days before the assessment. Regarding pressure ulcers, the most severe stage was documented. Sleeping disorders were defined as difficulty falling asleep or staying asleep, waking up too early, restlessness, or nonrestful sleep. Instability of conditions was defined as conditions/diseases making cognitive, ADL, mood, or behavior patterns unstable (fluctuating, precarious, or deteriorating) and can be seen as an estimation of the overall status. Clinical diagnoses were recorded by the study nurse who collected information from patients, general practitioners, and clinical records according to a checklist in the interRAI. Dementia, either Alzheimer disease or any other type of dementia, were combined into one variable. To assess depressive symptoms, the MDS Depression Rating Scale was used. A score greater than two indicates depression.21 The scale performs well when tested against interview-based instruments and even outperformed the Geriatric Depression Scale when tested against psychiatric diagnoses.21 Number of drugs represents the total number of prescribed drugs of the individual resident. Ethical approval for the study was obtained in all countries according to local regulations. Residents of the participating facilities, or
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their legal guardian in case of legal incapacity, were asked after comprehensive information was provided them to participate in the study and to give their informed consent. There were no exclusion criteria. Statistical Analysis From the original 4156 residents, those with missing or insufficient data about pain (n ¼ 230) were excluded, leading to a final study population of 3926 participants. For the analysis, cross-sectional and, regarding control and intensity of pain, additional longitudinal data (assessment at baseline, after 6 and 12 months, respectively) of the SHELTER database were used. Comparisons of data are presented through descriptive statistical parameters as absolute and relative frequencies, median/mean, and SD. After dichotomization, characteristics of nursing home residents with and without pain were compared. Pain prevalence was derived from the combination of pain frequency (at least present but not in the past 3 days) and/or current pain medication (continuous medication or medication on an asneeded basis [PRN]). For further analysis, only the group of residents suffering from pain (n ¼ 1900) was used to evaluate pain frequency, consistency, and breakthrough pain, as well as control and intensity of pain. Self-rated pain control and pain intensity were compared with each other, including their trajectories. Values of pain control were derived as a general conclusion of the resident about adequacy of current therapeutic regimen to control pain. Therefore, the 6 levels of pain control were dichotomized in pain adequately controlled (1, no pain; 2, pain intensity acceptable, no therapy or change in therapy required; 3, adequately controlled through pain therapy; 4, adequately controlled when following therapy plan, although this is not always done) and insufficiently controlled (5, therapy plan is being followed but pain control is insufficient; 6, no therapy plan, pain control insufficient). Intensity of pain was dichotomized in sufficiently (none or mild pain) and insufficiently managed (moderate, severe, or unbearable pain). The data were analyzed for the whole cohort and separately for each country to provide an adequate estimate of the associations. Statistical testing was carried out using chi-square and Kruskal-Wallis tests in all countries, including subgroups. Because of the large sample size, a significance level of 1% was used. No adjustment for multiple testing was done because of the observational character of the study. To explore the associations of pain with possible confounders like, for example, dementia or depression, bivariate logistic regression models were used. Only variables below the significance level of 1% in the bivariate analyses were considered for a multivariate logistic regression model. All analyses were performed by using SPSS version 20.0 (IBM SPSS Statistics, Armonk, New York) for Windows version 20.0. Results Sample Characteristics Characteristics of the study population are summarized in Table 1. Mean age of the 3926 participants was 83.6 (9.3) years, and 2876 (73.3%) were women. Of the total sample, 1900 residents (48.4%) could be defined as people suffering from pain according to the previously mentioned criteria. Of these, 838 (21.3%) had pain within the past 3 days before assessment. People suffering from pain suffer significantly less often from dementia (P < .001). Fractures, falls, severe pressure ulcers, sleeping disorders, unstable health conditions, cancers, and depression were significantly more frequent in residents
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with pain (P < .001). The number of drugs prescribed was also significantly higher. The basic characteristics showed substantial differences in individual countries (Table 2). For example, the prevalence of pain ranged from 19.8% in Israel to 73.0% in Finland. Residents in England tended to be more dependent (62.5%) in terms of ADLs than those in Germany or the Netherlands. Dementia in England (36.4%) and the Netherlands (41.0%) was noticeably less often diagnosed than in Finland (66.3%) or Israel (67.8%). Fractures in Germany were considerably less frequent (0.8%) than in other countries (average: 3.8%) and were most often recorded in the Netherlands (9.2%). Prevalence of pain across the European countries showed substantial differences (Table 2). The prevalence in Israel and Italy was significantly (P < .001) lower and in Finland significantly higher than the average prevalence of pain (total sample) in the European countries. Pain Medication Of those suffering from pain, 76.3% received an analgesic: 52.6% on a regular basis, 13.9% on a regular basis plus PRN, and 9.8% only as PRN; 23.7% were not given any analgesics. Types of analgesic prescribed: World Health Organization (WHO) I-level 62.5%, WHO IIlevel 7.8%, and WHO III-level 9.7%. Combination therapy (WHO I together with II or III) was found in 20.1% of the cases. Pain Characteristics Finland, England, and the Czech Republic were at the extremes in terms of pain frequency (Table 3). Pain frequency in the Czech Republic was significantly higher (P < .001) within the past 3 days before assessment when compared with the total pain sample. In England and Finland, pain frequency was lower when compared with the total pain sample, but did not reach a significant level (P ¼ .013 or P ¼ .027 respectively). In terms of pain consistency, the prevalence of residents with current pain (¼ pain within the past 3 days before assessment, either as single, intermittent, or constant episodes) was documented to be
Table 1 Characteristics of Study Population Divided According to Pain and No Pain No Pain Pain P n ¼ 2026 (%) n ¼ 1900 (%) Age, y, mean SD Female gender ADL disability* Assistance required Dependent Fractures Falls Pressure ulcers Sleeping disorders Unstable health conditions Diseases Cancers Ischemic heart disease Congestive heart failure Stroke Diabetes Chronic obstructive pulmonary disease Depression Dementia No. drugs, mean SD
83.3 9.5 1439 (71.0)
83.9 8.9 1437 (75.6)
.05 (T-Test) .001
864 802 41 328 151 237 466
(42.7) (39.6) (2.0) (16.4) (7.5) (11.7) (23.0)
774 756 109 410 258 296 574
(40.8) (39.8) (5.7) (21.6) (13.7) (15.6) (30.3)
<.001 <.001 <.001 <.001 <.001
181 532 338 453 465 195
(8.9) (26.3) (16.7) (22.4) (23.0) (9,6)
247 501 363 415 395 169
(13.0) (26.6) (19.2) (21.9) (20.9) (8.9)
<.001 .84 .04 .74 .12 .45
521 (26.3) 1234 (60.9) 6.2 3.1
727 (38.5) 872 (45.9) 8.4 3.6
.47
<.001 <.001 <.001 (T-Test)
ADL, activities of daily living. *Assistance required is defined by ADL hierarchical scale score 2 to 4, dependent by ADL hierarchical scale score 5 to 6.
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A. Lukas et al. / JAMDA 14 (2013) 421e428
Table 2 Characteristics of Study Population in Total and Divided into Individual Countries
Age, y, mean SD Female gender Pain ADL disability* Assistance required Dependent Depression Dementia Fractures Falls Prior pressure ulcers Cancer
Total sample n ¼ 3926 (%)
Czech Republic n ¼ 499 (%)
Germany n ¼ 472 (%)
England n ¼ 473 (%)
Finland n ¼ 481 (%)
France n ¼ 490 (%)
Israel n ¼ 566 (%)
Italy n ¼ 457 (%)
Netherlands n ¼ 488 (%)
83.6 9.3 2876 (73.3) 1900 (48.4)
81.3 8.3 362 (72.5) 277 (55.5)
84.6 8.2 373 (79.0) 245 (51.9)
84.6 9.5 338 (71.5) 258 (54.5)
84.8 8.0 360 (74.8) 351 (73.0)
87.4 7.8 373 (76.1) 288 (58.8)
81.3 10.9 404 (71.4) 112 (19.8)
84.4 8.3 373 (73.7) 105 (23.0)
81.0 10.4 329 (67.4) 264 (54.1)
1638 1558 1248 2106 150 738 409 428
160 203 145 240 36 131 79 69
263 115 102 243 4 111 46 49
127 291 154 172 16 71 52 55
290 129 170 319 17 101 23 32
154 229 170 283 10 95 58 86
192 284 164 384 8 58 37 40
199 191 155 265 14 64 62 30
253 116 188 200 45 107 52 67
(41.8) (39.7) (32.2) (53.6) (3.8) (19.0) (10.4) (10.9)
(32.1) (40.7) (29.3) (48.1) (7.2) (26.3) (15.8) (13.8)
(55.7) (24.4) (21.6) (51.5) (0.8) (23.5) (9.7) (10.4)
(26.8) (62.5) (32.6) (36.4) (3.4) (15.1) (11.0) (11.6)
(60.9) (27.1) (35.9) (66.3) (3.5) (21.2) (4.7) (6.7)
(31.4) (46.7) (34.7) (57.8) (2.0) (19.4) (11.8) (17.6)
(33.9) (50.2) (30.1) (67.8) (1.4) (10.8) (6.5) (7.1)
(43.5) (41.8) (35.6) (58.0) (3.1) (14.0) (13.6) (6.6)
(51.8) (23.8) (38.5) (41) (9.2) (21.9) (10.7) (13.7)
ADL, activities of daily living. *Assistance required is defined by ADL hierarchical scale score 2 to 4, dependent by ADL hierarchical scale score 5 to 6.
the lowest in Finland (P ¼ .014) and highest in the Czech Republic and the Netherlands (P < .001). Dutch nursing home residents had a higher percentage of intermittent pain episodes (P < .001), and Czech residents had a higher percentage of constant pain sufferers (P < .001), as did Italian residents (P < .001). Regarding single pain episodes, German residents scored the most often, whereas the French residents rated the least often. Breakthrough pain was relatively rare. Only 7.3% of all pain sufferers reported this type of pain, with Italy as the country with the highest percentage (18.1%). Data on pain control and intensity are presented in Figure 1. Pain control, as an overall estimation about adequacy of current therapeutic regimen to control pain reported by the residents or rated by the carers, was given a good rating. Compared with the total pain sample, pain in England was better controlled (P ¼ .004) and in the Czech Republic pain was less well controlled (P ¼ .002). In general, when residents were asked whether their pain was sufficiently controlled, most pain sufferers responded in the affirmative. Only 12% reported that their pain was not being controlled. In contrast to this, pain intensity was estimated to be considerably worse (Figure 1). In only 56.8% was pain estimated as sufficiently managed (no or mild pain). Pain intensity was estimated to be significantly better (P .001) in Germany and Finland, whereas in Israel and the Netherlands it was rated worse (P .001) compared with the total sample. A comparison of pain control (amount of pain, adequately controlled) and pain intensity (amount of no or mild pain) trajectories is presented in Figure 2. Adequacy of self-rated pain control, as well as the amount of self-rated sufficiently managed pain intensity in the total pain sample improved during the observational period of 1 year. During the 1-year follow-up, 1132 (59.6%) of the 1900 participants with pain were lost to follow-up; 768 (40.4%) participants
completed all three assessments. From those who were lost to follow-up, 362 (19.1%) residents died during the year, 187 (9.8%) residents were discharged to other facilities or returned home, and in 583 (30.7%) of the cases no detailed information about the reason for loss to follow-up was available. In relation to baseline, dropouts were statistically significantly (P .01) more likely to be of male gender and had significantly more falls and fractures, received more drugs, and more often had an unstable health condition compared with those who completed all three assessments. Strokes occurred significantly less often in the group of dropouts. At baseline, there were no statistically significant differences in terms of pressure ulcers, sleeping disorders, cancer, ischemic heart disease, congestive heart failure, diabetes, chronic obstructive pulmonary disease, depression, or dementia in those who withdrew from the study compared with those who completed the study. Multivariate Logistic Regression Models Table 4 displays the clinical correlates of pain in total and across the 8 countries. In multivariate logistic regression models, clinical correlates of pain were very different in detail. Pain was positively correlated (total pain sample) with female gender and diagnosis of fracture, cancer, falls, unstable health conditions, severe pressure ulcers, and clinical depression. On a country level, depression (Czech Republic, England, Finland, France, and Italy) and severe pressure ulcers (England, France, and the Netherlands) were most frequently correlated with the diagnosis of pain. Associations with falls and unstable health conditions could be shown only for Italy, whereas an association with cancer was significant only for the Netherlands. Diagnosis of dementia was negatively associated with pain in the total pain sample, as well as in the Czech Republic, England, France, Israel, Italy, and the Netherlands.
Table 3 Pain Characteristics in Total Pain Sample and Divided into Individual Countries
Frequency Present, not past 3 days Present 1e2 of past 3 days Present past 3 days Consistency Single episode Intermittent Constant Breakthrough
Total Pain Sample n ¼ 1900 (%)
Czech Republic n ¼ 277 (%)
Germany n ¼ 245 (%)
England n ¼ 258 (%)
Finland n ¼ 351 (%)
France n ¼ 288 (%)
Israel n ¼ 112 (%)
Italy n ¼ 105 (%)
Netherlands n ¼ 264 (%)
1062 (55.9) 318 (16.7) 520 (27.4)
125 (45.1)* 43 (15.5)* 109 (39.4)*
148 (60.4) 39 (15.9) 58 (23.7)
164 (63.6) 26 (10.1) 68 (26.4)
214 (61.0) 65 (18.5) 72 (20.5)
167 (58.0) 37 (12.8) 84 (29.2)
62 (55.4) 28 (25.0) 22 (19.6)
56 (53.3) 23 (21.9) 26 (24.8)
126 (47.7) 57 (21.6) 81 (30.7)
16 148 21 28
21 156 18 25
8 145 29 11
11 63 11 8
18 41 23 19
8 181 23 21
164 944 224 139
(8.6) (49.7) (11.8) (7.3)
15 146 57 11
(5.4)* (52.7)* (20.6)* (4.0)
*Significant difference compared with total pain sample (P < .01).
67 64 42 16
(27.3)* (26.1)* (17.1)* (6.5)
(6.2) (57.4) (8.1) (10.9)
(6.0) (44.4) (5.1) (7.1)
(2.8)* (50.3)* (10.1)* (3.8)
(9.8) (56.3) (9.8) (7.1)
(17.1)* (39.0)* (21.9)* (18.1)*
(3.0)* (68.6)* (8.7)* (8.0)
A. Lukas et al. / JAMDA 14 (2013) 421e428
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Fig. 1. Comparisons of pain control (adequately controlled) and pain intensity (none or mild pain) in total and divided into different countries. *Significant difference compared with total pain sample (P < .01). **Pain control (adequately controlled): derived from general conclusions, “Pain controldadequacy of current therapeutic regimen to control pain.” ***Pain intensity (none or mild pain): derived from intensity measurements of pain, “Intensity of highest level of pain in the previous 3 days.”
Clinical correlates of pain intensity (insufficiently controlled pain intensity) in total and across all participating countries are displayed in Table 5. Regarding the total pain sample, falls, severe pressure ulcers, and depression were positively associated with insufficient pain management, whereas dementia was negatively correlated. On a country level, significant correlations were seen in only two countries: the Czech Republic (depression) and France.22 Discussion This cross-sectional comparison of long term care facilities addresses one of the most important quality-of-life indicators and
Fig. 2. Comparisons of pain control (adequately controlled) and pain intensity (none or mild) trajectories in total, longitudinal results (n ¼ 768). *Significant difference compared with initial pain sample (P .001). **Pain control (amount of pain, adequately controlled): derived from general conclusions, “Pain controldadequacy of current therapeutic regimen to control pain.” ***Pain intensity (amount of none or mild pain): derived from intensity measurements of pain, “Intensity of highest level of pain in the previous 3 days.”
influence factors on function for residents: pain.4 For the first time, the interRAI LTCF assessment allows a comprehensive European-wide evaluation of residents’ pain in long term care facilities and can be used to identify differences among European countries so as to improve the quality of care. Our study shows that pain is still a common condition among older adults living in European long term care facilities. Altogether, almost half of the participating residents (48.4%) experienced pain to some extent. This is in line with other authors who found comparable prevalence rates.5,6,23 Previous studies have shown that pain prevalence rates in nursing home populations reached up to 83%.12e14,24e27 A recent review by Takai et al9 found a prevalence rate among nursing home residents between 3.7% and 79.5%, depending on research methods and data sources used to detect pain. The highest prevalence rates were seen in residents’ self-reports (60%e70%), followed by chart reviews, such as the MDS (up to 64%) and observational methods (47%).9,28 Even the selection of a certain data source means determination of a specific observational period that has an impact on the diagnosis of pain. The longer the observation period, the higher the prevalence rate.9 Although residents’ self-reports usually represent a period of a few days, observational tools typically cover just a few minutes. Compared with other assessments, the interRAI LTCF reflects a relatively short evaluation period of just 3 days. Thus, the short period could compensate, on the one hand, for memory problems in the case of cognitive impairment but, on the other, lead to an underdiagnosis of pain. Prevalence rates are also influenced by whether daily pain or pain at a certain moment (only 1 day during a given period) was measured. Studies using daily pain as a criterion usually found lower prevalence rates.16 Against this background, Zwakhalen et al6 pointed out that pain prevalence rates in nursing home residents should be interpreted with caution. Therefore, we have to be aware that the use of the interRAI LCTF will influence the prevalence rate of pain. However, this easy-to-use and stable questionnaire allows for comparison across countries. Here, the prevalence of pain varies
426
Table 4 Clinical Correlates of Pain, in Total and Divided into Different Countries in a Multivariate Logistic Regression Model* Total
Age Female gender Fracture Cancer Falls Unstable health condition Severe pressure ulcers Depression Dementia
Czech Republic
Germany
England
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
Finland adjOR
99% CI
adjOR
France 99% CI
adjOR
Israel 99% CI
adjOR
Italy 99% CI
adjOR
Netherlands 99% CI
1.01 1.29 2.56 1.47 1.28 1.34
1.00e1.02 1.05e1.58 1.54e4.26 1.11e1.95 1.02e1.61 1.09e1.64
1.00 1.48 2.53 1.33 1.15 1.18
0.97e1.03 0.84e2.61 0.83e7.75 0.64e2.80 0.64e2.08 0.61e2.28
1.02 1.47 2.85 1.14 0.85 1.34
0.98e1.05 0.79e2.74 0.13e63.89 0.51e2.55 0.47e1.52 0.62e2.87
1.04 1.22 2.44 1.85 0.91 0.74
1.01e1.07 0.67e2.20 0.49e12.26 0.80e4.28 0.44e1.91 0.38e1.43
1.02 0.80 2.65 0.59 1.04 1.54
0.98e1.06 0.40e1.61 0.35e20.00 0.20e1.72 0.50e2.14 0.85e2.80
0.97 1.58 5.81 1.35 0.98 0.83
0.94e1.00 0.85e2.93 0.35e96.48 0.68e2.67 0.51e1.89 0.39e1.75
0.99 0.93 3.69 1.00 1.56 0.59
0.97e1.02 0.49e1.77 0.43e32.10 0.31e3.24 0.63e3.86 0.28e1.25
0.99 1.50 2.11 1.33 3.46 2.15
0.95e1.03 0.69e3.24 0.35e12.62 0.40e4.44 1.53e7.82 1.04e4.46
1.00 1.32 2.39 2.54 1.13 1.50
0.97e1.03 0.77e2.29 0.92e6.17 1.15e5.60 0.61e2.13 0.87e2.61
2.03 1.69 0.52
1.51e2.72 1.40e2.05 0.44e0.63
1.42 2.25 0.42
0.71e2.83 1.28e3.96 0.25e0.70
2.04 1.58 0.98
0.86e4.82 0.86e2.90 0.60e1.60
3.22 2.28 0.33
1.23e8.40 1.24e4.19 0.19e0.58
1.31 2.19 0.80
0.29e5.89 1.11e4.32 0.41e1.56
5.16 2.12 0.44
1.89e14.07 1.19e3.77 0.26e0.75
2.54 1.52 0.45
0.92e7.02 0.82e2.83 0.24e0.84
1.53 2.54 0.49
0.62e3.78 1.34e4.85 0.25e0.97
3.05 1.54 0.49
1.21e7.64 0.87e2.72 0.28e0.83
Table 5 Clinical Correlates of Insufficiently Controlled Pain Intensity (Moderate to Unbearable Pain Intensity) in the Previous 3 Days, in Total and Divided into Different Countries in a Multivariate Logistic Regression Model* Total
Age Female gender Fracture Cancer Falls Unstable health condition Severe pressure ulcers Depression Dementia
Czech Republic
Germany
England
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
adjOR
99% CI
adjOR
Finland 99% CI
adjOR
France 99% CI
0.98 0.97 0.74 1.21 1.38 1.22 1.45 1.57 0.61
0.97e.1.00 0.72e1.30 0.43e1.29 0.84e1.74 1.02e1.88 0.92e1.62 1.01e2.08 1.21e2.04 0.47e0.79
0.97 1.08 0.37 0.96 0.95 1.72 1.18 2.86 0.49
0.93e1.01 0.49e2.35 0.10e1.30 0.39e2.42 0.43e2.06 0.73e4.09 0.48e2.87 1.39e5.91 0.24e1.02
0.99 0.96 1.21 2.33 0.86 1.54 0.94 1.24 0.56
0.94e1.04 0.35e2.62 0.04e39.78 0.74e7.32 0.35e2.11 0.52e4.58 0.31e2.89 0.53e2.91 0.27e1.18
1.00 0.60 0.57 1.27 1.75 0.96 1.35 1.03 0.85
0.96e1.05 0.27e1.35 0.10e3.33 0.49e3.30 0.67e4.61 0.40e2.30 0.54e3.37 0.49e2.16 0.38e1.89
1.00 0.90 1.61 1.21 1.69 1.59 2.29 1.84 0.79
0.95e1.04 0.41e1.98 0.33e7.87 0.32e4.61 0.79e3.63 0.80e3.17 0.55e9.44 0.92e3.65 0.39e1.62
0.99 0.68 1.13 0.81 1.23 1.12 1.53 1.89 0.42
0.95e1.03 0.31e1.50 0.17e7.44 0.35e1.83 0.53e2.87 0.46e2.72 0.64e3.67 0.97e3.66 0.22e0.80
adjOR, adjusted odds ratio; 99% CI, 99% confidence interval. Significant results are in bold. *Models were adjusted for all variables in Table 1 that were statistically significant (P < .01), except age, which was forced into the model. y OR cannot be estimated.
Israel adjOR
Italy
Netherlands
99% CI
adjOR
99% CI
adjOR
99% CI
1.02 2.34 0.23
0.97e1.07 0.65e8.41 0.00e24.09
16.88 1.65 1.20 1.71 0.66
0.85e333.92 0.34e7.87 0.19e7.53 0.51e5.74 0.21e2.14
0.99 0.74 0.38 1.07 3.65 1.45 1.26 1.67 0.59
0.92e1.07 0.19e2.94 0.03e4.95 0.15e7.94 0.95e14.02 0.43e4.90 0.28e5.62 0.52e5.36 0.18e1.94
0.97 1.38 0.52 0.68 1.47 1.37 1.86 0.78 0.95
0.94e1.01 0.65e2.93 0.17e1.59 0.28e1.65 0.63e3.44 0.63e2.98 0.69e5.00 0.35e1.71 0.45e2.01
y
A. Lukas et al. / JAMDA 14 (2013) 421e428
adjOR, adjusted odds ratio; 99% CI, 99% confidence interval. Significant results are in bold. *Models were adjusted for all variables in Table 1 that were statistically significant (P < .01), except age, which was forced into the model.
A. Lukas et al. / JAMDA 14 (2013) 421e428
significantly among countries, ranging from 19.8% (Israel) to 73.0% (Finland). Comparable differences were reported from the AdHOC project,15 which, in contrast to the present study, addressed community-dwelling elderly receiving home care services. Apart from the AdHOC study, other studies also found considerable interbut also intracountry differences.6,9,16,17,23 Regional differences in nursing home admission criteria might be one possible explanation of our results. This might be supported by the differences observed in people suffering from dementia within the individual countries in the present study, ranging from 36.4% to 67.8%, with an average percentage of 54.0%. Also, differences in settings and case mix might be possible explanations for our results.29 Because of the problem of underdiagnosing dementia in long term care facilities, the number of people suffering from dementia can probably be assumed to be even higher in reality30; however, there is some controversy about the influence of cognitive impairment/dementia on pain prevalence. Some authors concluded that cognitive status does not affect pain prevalence,31 whereas others found some influence.26 Furthermore, others found a significantly lower rate of pain prevalence among residents with higher levels of cognitive impairment.23,32,33 According to Zyczkowska et al,33 we found a negative relationship between impaired cognition and pain detection. Hence, impaired cognition seems to have a clear impact on pain recognition, even if there is no difference in pain-related diagnoses.3,13 This could be primarily because of difficulties in verbal communication. As dementia progresses, the ability of pain sufferers to verbally communicate their pain is often compromised, complicating the task of recognizing pain. During the implementation of the interRAI LTCF, we tried to improve detection rates by using supplemental observational aspects for those participants who were unable to answer. Up to now, it is unclear to what extent this specification improved pain detection in severe dementia compared with common observational tools (eg, the PAINAD).34,35 However, our results seem to indicate at least difficulties in detection ability. Further studies addressing this topic could possibly answer this question. Apart from dementia, many other country-specific factors, resident-dependent factors (eg, differences in perception of pain), facility-dependent factors (eg, previous training, preexisting pain management, and standards in the facilities), and possible climatic influences36 can be discussed as being partially responsible for our observations. Fractures, falls, severe pressure ulcers, sleeping disorders, unstable health conditions, cancer, and depression, as well as the number of drugs used, were significantly more often associated with pain. Similar findings, at least in part, were found by other authors. For example, with regard to sleeping disorders, especially in cases of serious pain,12,28 cancer,16,27 and depression,15e17,26e28,33 analogous positive correlations were reported. Other authors did not find clear significant correlations; for example, fractures.17,37 Whereas the Netherlands showed a significant correlation of pain and hip fracture (odds ratio 1.59; 95% confidence interval 1.16e2.18), this was not the case with Finland and Italy. Regarding sleeping disorders,14 too, other authors had different findings. Lin et al37 could not find a significant association with falls, probably because a different population was examined (residents with severe dementia). In light of these findings, when determining and treating pain, attention also should be paid to detecting and treating these diseases or symptoms. The multivariate models showed similar positive and negative correlations between clinical characteristics of the residents and management of pain but considerable variations on a country level. Although most pathologies were positively associated, dementia was not. Furthermore, falls, severe pressure ulcers, and depression appear to be associated with inadequate pain management, whereas, once again, a diagnosis of dementia seemed to “protect” against
427
insufficient pain management. Taken together, significant psychopathology (depression, dementia) seems to influence the individual pain awareness to a great extent and could partly explain the difference between self-rated pain control and pain-intensity measures. Another explanation could be that many elderly persons are convinced that pain is part of a normal aging process.38 Other researchers saw comparable satisfaction with pain treatment despite verifiable insufficient treatment.14 According to Boerlage et al,14 statements by the residents may reflect low expectations rather than appropriate pain treatment. On a positive note, it should be recorded that pain control as well as pain intensity improved after interRAI was implemented, especially within the first 6 months. This could be interpreted as another confirmation that the introduction of the assessment might have led to a significant improvement that was sustained over a further 6 months; however, from a more conservative interpretation, our findings also could be interpreted as selection- or biased-based respectively. Those who could not complete the 1-year follow-up seemed to have, at least in several characters, a significantly worse health condition compared with those who completed all 3 assessments. A more specific statement about the real reason for the effect observed was not possible through the chosen study design and has to be clarified by future studies. In total, however, our findings contribute to the current understanding that pain management is still suboptimal in many settings and highlights the need for improvement in European long term care facilities.
Limitations Our study has several limitations, which should be mentioned. Despite the comprehensive character of the interRAI LCTF, the recording of pain is not its specific focus. Pain was assessed by interviewing residents, direct observation, and proxy reports by care staff. The potential for overestimation and especially underestimation remains a concern, especially in residents suffering from dementia. In addition, we lack data on possible causes for pain and duration. Samples in SHELTER countries were not strictly selected as representative of all nursing homes in each respective country. We tried to consider as many factors as possible that may influence the results, such as city or countryside, private institutions, and church carriers.
Conclusion The SHELTER study is the first study of its kind with such a comprehensive comparison of nursing home residents across Europe. It could be shown that interRAI LTCF can be used to identify significant differences and clinical correlations regarding pain characteristics of nursing home residents across different European countries. Furthermore, the implementation of interRAI LTCF seems probably to be associated with an improvement in pain control and pain intensity. Our results confirmed that pain in long term care facilities is still a major health care problem in Europe and prevalence rates vary to a great extent. It is our hope that our findings will influence the actions of health care providers and those responsible for health care policies and allocations of resources so as to improve pain management in European long term care facilities. Pain detection and treatment requires further attention, especially in this highly vulnerable group of older people living in long term care.
Acknowledgments The authors thank Alexander Connelly and Paul East for intensively reviewing the manuscript.
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