Factors Associated with Self- and Caregiver Report of Pain among ...

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kJOURNAL OF PALLIATIVE MEDICINE Volume 8, Number 3, 2005 © Mary Ann Liebert, Inc.

Factors Associated with Self- and Caregiver Report of Pain among Community-Dwelling Persons with Dementia JOSEPH W. SHEGA, M.D.,1 GAVIN W. HOUGHAM, Ph.D.,1 CAROL B. STOCKING, Ph.D.,1,2 DEON COX-HAYLEY, D.O.,1 GREG A. SACHS, M.D.1

ABSTRACT Background: Among cognitively intact patients, self- and caregiver report of patient pain has been associated with worse psychological health for both the patient and caregiver. Little existing research examines factors associated with patient self-report of pain and caregiver report of patient pain among community-dwelling persons with dementia. Objective: To identify patient and caregiver factors associated with self- and caregiver report of patient pain among community-dwelling persons with dementia. Design: Cross-sectional analysis of a longitudinal study using structured interviews with dementia patients and their family caregivers. Setting and subjects: Urban outpatient geriatrics clinics affiliated with a university hospital. Dyads composed of dementia patients and their family caregivers were approached prior to routine clinic visits to participate in the study. Measurements: Relevant patient measurements included self-report of pain; cognitive, functional, and comorbidity assessments; a screen for depression; and demographic information. Relevant caregiver measurements included their report of patient pain and agitation, screens for depression and strain, and demographic information. Results: Of 115 dyads, 37 patients (32%) and 57 caregivers (53%) reported the patient to be in pain. No patient or caregiver factors were significantly associated with patient self-report of pain. In the univariate analysis, caregiver reports of patient pain were associated with the patient not being depressed (p  .036), caregiver reports of patient agitation (p  .038), higher level of education in the caregiver (p  .029), and caregiver depression (p  .019). In multivariate logistic regression analyses, caregiver depression and patient agitation remained significantly associated with caregiver report of patient pain. Conclusions: In community-dwelling persons with dementia, self-report of pain was not associated with any other variables measured, suggesting that pain should be assessed through direct self-report and treated accordingly. Caregiver report of patient pain was associated with both caregiver report of patient agitation and caregiver depression. These findings suggest that clinicians may need to routinely assess patient pain, patient agitation, and caregiver depression. More research is needed to understand the relationship between these conditions.

1The 2The

University of Chicago, Department of Medicine, Section of Geriatrics, Chicago, Illinois. University of Chicago, MacLean Center for Clinical Medical Ethics, Chicago, Illinois.

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INTRODUCTION

T

medical conditions a person may have increases with age. For example, diabetes, postherpetic neuralgia, spinal stenosis, osteoarthritis, gout, pseudogout, and osteoporosis may result in neuropathic pain and/or nociceptive pain.1–5 In addition to being more common with age, many of these conditions affect multiple sites, compounding the impact of the pain. The prevalence of dementia also increases with age,6 and persons with dementia suffer from many of these pain-producing, chronic medical conditions.1 These conditions may help explain why up to 80% of residents in nursing homes report pain1,7 and almost a third of persons with dementia who reside in the community report pain prior to routine clinic appointments.8 The assessment of pain in persons with dementia can be challenging and may require multiple evaluation methods.9 In persons with mild to moderate dementia, self-report appears to be reliable.10 However, as a dementia progresses and short-term memory worsens, persons with dementia may have greater difficulty remembering their pain experience between clinic visits.11 Caregivers can provide valuable information about the patient’s pain experience, and many in the field recommend asking caregivers about the patient’s pain.9 Through the incorporation of varied assessment methods, clinicians obtain a more comprehensive assessment of pain and decrease the odds of missing significant pain in this vulnerable population. In addition to the physical, psychological, and social suffering brought about by pain, self- or caregiver report of pain may be associated with poorer health status for either informant. Pain reports in cognitively intact, community-dwelling older adults have been associated with poorer function, higher rates of depression, and a poorer quality of life.9 Similarly, in the nursing home, pain has been associated with poorer function12 and higher rates of depression,12,13 as well as increased reports of agitation.13 We are unaware of any studies among community-dwelling persons with dementia examining the association of patient reports of pain with factors such as patient depression or function or caregiver depression or strain. Similarly, we are unaware of any studies exploring relationships between caregiver reports of patient pain and these factors. AdditionHE NUMBER OF POTENTIALLY PAINFUL

ally, some of the limited number of studies that have been published to date that identify patient and/or caregiver factors associated with pain have not included a multivariate analysis to help account for other factors that may modify the observed effects. In this paper, we address some of the current deficits in the literature. This analysis has three goals: (1) examine patient and caregiver factors associated with patient self-report of pain among community-dwelling persons with dementia, (2) examine patient and caregiver factors associated with caregiver report of patient pain, and (3) identify significant covariates associated with self- and caregiver report of patient pain in univariate analysis and determine if any modifying effects occur with covariate adjustment in a multivariate model.

METHODS Study population The analyses presented here are part of a larger demonstration project, PEACE (Palliative Excellence in Alzheimer Care Efforts), which enrolled community-dwelling persons with dementia and their family caregivers. A total of 150 patient– family caregiver dyads were recruited from an outpatient geriatrics clinic affiliated with the University of Chicago Hospitals between July 1999 and June 2000. Details outlining the methodology have been published previously14 and will only be described briefly here. The University of Chicago Institutional Review Board reviewed and approved the study.

Data collection Trained research assistants conducted separate interviews with patients and caregivers, usually before a regularly scheduled outpatient clinic appointment, with each encounter taking from 15 to 40 minutes. Patient and caregiver interviews occurred at study entry and every 6 months thereafter for 2 years. For inclusion in the current analyses, we needed patients and caregivers to have completed reports of patient pain on the same day. If more than one paired pain report existed, we included the earliest in these analyses. Pertinent information from the patient interviews used in the analyses includes demographic questions and a pain assessment, as well as the

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Folstein Mini-Mental State Examination (MMSE)15 and the Geriatric Depression Scale (GDS).16 Information used from the caregiver interviews includes demographic questions, the Beck Depression Inventory,17 the Caregiver Strain Index (CSI),18 caregiver reports of patient behavior on the Cohen–Mansfield Agitation Inventory (CMAI),19 the Katz Index of Activities of Daily Living (ADL),20 Instrumental Activities of Daily Living (IADL),21 and their assessment of the patient’s pain. Immediately following the interview, the research assistants completed the Charlson weighted index of comorbidity,22 a medical complications checklist, the Functional Assessment

Staging (FAST),23 and additional patient demographics from the medical record. Also, the etiology of the patient’s dementia was recorded as listed in the patient’s medical record. Pain was assessed using the Verbal Descriptor Scale (VDS), which assesses the presence and severity of pain on a 7-point scale. The scale’s psychometric properties in persons with and without cognitive impairment have been well described elsewhere.10,11 Patients (and caregivers) were asked, “How much pain are you (is the patient) having right now?” while the interviewer presented a card visually depicting the scale. The card contained a series of phrases that describe

TABLE 1. DEMOGRAPHICS OF COMMUNITY-DWELLING PERSONS WITH DEMENTIA AND THEIR FAMILY CAREGIVERS (n  115 DYADS) Patients Female (%) Age (yr) Mean  SD Ethnicity (%) African American White Other Education in years (%) 8 9–12 12 Unknown Marital status (%) Widowed Married Never married Divorced/separated Folstein Mini-Mental State Examinationa Mean  SD Functional status ADLb mean  SD IADLc mean  SD Cohen-Mansfield Agitation Inventoryd Mean  SD Range Geriatric Depression Scale (15-point version)e Mean  SD % Depressed Charlson Comorbidity Indexf Mean  SD aReported

75.7 84.1  6.70 84.0 14.0 2.0 22.0 43.0 28.0 7.0 62.0 29.0 5.0 4.0 16.6  7.20 8.5  2.70 15.3  3.90 46.9  18.9 29–142

Caregivers Female (%) Age (yr) Mean  SD Ethnicity (%) African American White Other Education in years (%) 8 9–12 12 Unknown Relationship to patient (%) Spouse Child Other Lives with patient (%) Caregiver Strain Indexg Mean  SD % 6 Beck Depression Inventoryh Mean  SD % depressed

77 61.1  13.3 82 16 2 4 34 57 5 19 63 18 63 5.86  3.60 41 3.41  4.10 27

3.1  2.70 24.0 2.2  1.70

as mean, scores range 0–30, higher scores more cognitively intact. of Daily Living; reported as mean, scores range 5–15, higher scores more physically impaired. cInstrumental Activity of Daily Living; reported as mean, scores range 7–21, higher scores more physically impaired. dReported as mean, scores range 29–203, higher scores more reported agitation. eScales range 0–15, dichotomized with scores of 5 and above indicates positive screen for depression. fReported as mean, scores range 0–37, higher scores indicate higher risk of mortality. gScores range 0–13, dichotomized with scores of 6 and above indicates significant strain. hScores range 0–39, dichotomized with scores of 5 and above indicates positive screen for depression. bActivity

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pain and a corresponding numeric value: no pain  0, slight pain  1, mild pain  2, moderate pain  3, severe pain  4, extreme pain  5, and pain as bad as it could be  6. Patients and caregivers selected a phrase or number on the card that best described patient pain.

Statistical analysis As we were most interested in modeling the presence or absence of any pain, patient and caregiver reports of pain on the VDS were dichotomized into “any pain” or “no pain.” Selfand caregiver reports of patient pain were crosstabulated and tested for associations by chisquare analysis for categorical patient and caregiver variables and by analysis of variance (ANOVA) tests of differences in means for continuous variables. Pearson correlation coefficients were generated to identify any significant relationships between patient and caregiver variables. Associations that approached statistical significance (p  .10) in the univariate analyses and standard demographic variables were selected for subsequent multivariate logistic regression analyses.24 We modeled the odds of patient–caregiver pain report (any pain or no pain) with these selected patients as well as caregiver characteristics. Statistical analyses were performed using SPSS version 11.01 (SPSS Inc., Chicago IL).

TABLE 2.

ASSOCIATION

OF

PATIENT

AND

RESULTS Of the 150 patient–caregiver dyads enrolled in PEACE, 115 pairs (77%) had at least one interview cycle where both patient and caregiver gave usable responses to the VDS on the same day. Of these 115 pairs, 66 (58%) were obtained at study entry, and 37 (32%) from 6-month, 9 (8%) from 12-month, and 3 (3%) from 24-month follow-up interviews. There were no significant differences in race, education, or age between the 115 patients and caregivers included in these analyses and the complete cohort of 150 dyads. The demographic characteristics of patient subjects and caregivers are displayed in Table 1. The etiologies of the patient’s dementias are 37% Alzheimer’s disease, 25% mixed, 22% cerebrovascular, 4% other, and 12% undetermined. Patient FAST scores were grouped into stages 1 to 4 (needs assistance with IADLs), 5 and 6 (needs assistance with ADLs), and 7 (complete assistance needed), with 53.6%, 46.2%, and 0% of patients coded into each group, respectively. Of the 115 patients and caregivers, 37 patients (32%) self-reported pain and 57 caregivers (53%) reported the patient was currently experiencing pain. Table 2 displays the association between patient self-report of pain and patient and caregiver factors. While no patient or caregiver factors were associated with patient pain report at p  .05 significance level, one patient factor, higher scores

CAREGIVER FACTORS

WITH

PATIENT PAIN REPORTS (n  115 DYADS)

Patient or caregiver factora

No pain n  78

Any pain n  37

pb

Folstein MMSE Patient function by ADL Patient functon by IADL Patient depression by Geriatric Depression Scale: GDS (%) Charlson Comorbidity Index Caregiver Strain Index: 6 (%) Cohen-Mansfield Agitation Inventory Caregiver depression by Beck Depression Inventory (%) Patient age (yr) Caregiver age (yr) Patient gender (male) Caregiver gender (male) Education of patient (yr) Education of caregiver (yr) Caregiver lives with patient

15.87 8.53 15.60 17 (22) 2.16 35 (45) 47.14 24 (31) 81.79 61.04 18 (23) 19 (24) 11.11 14.03 49 (63)

18.16 8.41 14.78 11 (30) 2.36 18 (49) 46.47 6 (16) 80.46 61.30 10 (27) 8 (22) 11.83 14.46 23 (64)

.100c .827 .292 .266 .563 .378 .870 .079c .321 .923 .405 .471 .404 .551 .542

aSee

Table 1 and its legend for greater description of factors. (p) associated with the relevant tests of association of the factor with patient pain reports, none or any; see text for additional details. cp-Value significant at p  .10 level. bProbabilities

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on the Folstein MMSE (p  .10), and one caregiver factor, not being depressed based on the Beck Depression Inventory (p  .079), approached statistical significance. Dichotomization of the Folstein MMSE into greater than or equal to 10 (mild to moderate dementia) and less than 10 (severe dementia) was not associated with patient pain report (p  .38). Table 3 displays the association between caregiver report of patient pain and patient and caregiver factors. Caregivers were significantly more likely to report the patient to be in pain if the patient did not report depression based on the Geriatric Depression Scale (p  0.036) or if the caregiver reported higher levels of patient agitation as reported on the CMAI (p  0.038). Caregivers who reported patients to be in pain had more years of education (p  0.029) and were more likely to be depressed themselves based on a cutoff score of 5 or higher on the Beck Depression Inventory (p  0.019). There was also a trend for younger caregivers to report persons with dementia to be in pain (p  0.078). Caregiver selfreport of depression and report of patient agitation on the CMAI were positively and significantly correlated (r  0.357, p  .001). Table 4 displays the results of the logistic regression of patient self-report of pain (any pain or no pain) by standard demographic variables

and those patient and caregiver variables found to approach statistical significance in the univariate analysis. None of these variables were significantly associated with patient pain reports when they were entered in the logistic regression model. Tables 5 and 6 display parallel results of two logistic regressions of caregiver report of patient pain. Given that caregiver depression and patient agitation exhibit a nontrivial linear relationship, which violates the assumption of independence among predictors, separate logistic regressions were generated for each of these two predictors. Table 5 displays the results of the logistic regression with caregiver depression included in the model. Caregivers who are depressed based on the Beck Depression Inventory have an almost threefold increase in the likelihood of reporting patient pain compared to caregivers who were not depressed (p  0.029). Table 6 displays the results of the logistic regression with patient agitation included in the model. For every 1-point increase on the CMAI, there is a 3% increase in the likelihood of caregivers reporting patient pain (p  0.049). None of the other predictors entered into either regression model reached statistical significance at the .05 level, though caregiver education approached significance.

TABLE 3. ASSOCIATION OF PATIENT AND CAREGIVER FACTORS CAREGIVER REPORT OF PATIENT PAIN (n  115 DYADS)

WITH

Patient or caregiver factora

No pain n  58

Any pain n  57

pb

Folstein MMSE Patient function by ADL Patient functon by IADL Patient depression by Geriatric Depression Scale: GDS (%) Charlson Comorbidity Index Caregiver Strain Index: 6 (%) Cohen-Mansfield Agitation Inventory Caregiver depression by Beck Depression Inventory (%) Patient age (yr) Caregiver age (yr) Patient gender (male) Caregiver gender (male) Education of patient (yr) Education of caregiver (yr) Caregiver lives with patient

16.52 8.51 8.44 18 (31) 2.24 22 (38) 42.55 9 (16) 81.91 63.40 13 (24) 14 (25) 11.27 13.41 33 (61)

16.70 8.47 8.51 10 (18) 2.20 31 (54) 50.48 21 (37) 80.87 59.03 15 (25) 13 (22) 11.41 14.86 39 (65)

0.893 0.943 0.761 0.036c 0.910 0.164 0.038c 0.019c 0.408 0.078c 0.519 0.398 0.867 0.029c 0.407

aSee

Table 1 and its legend for a greater description of factors. (p) associated with the relevant tests of association of the factor with patient pain reports, none or any; see text for additional details. cp-Value significant at p  .10 level. bProbabilities

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SHEGA ET AL. TABLE 4. LOGISTIC REGRESSION OF PATIENT SELF-REPORT OF PAIN BY SIGNIFICANT PATIENT AND CAREGIVER FACTORS IN THE UNIVARIATE ANALYSIS AND DEMOGRAPHIC VARIABLES (n  115) Beta

p

Odds ratio

Lower 95% CIa

Upper 95% CIa

0.04 0.04 0.01 0.04 1.07

.244 .941 .807 .304 .053

0.96 0.96 1.01 1.04 2.91

0.90 0.36 0.91 0.97 0.99

1.03 2.55 1.13 1.11 8.56

Variable Patient age Patient being male Patient education Patient MMSEb Caregiver not depressed aConfidence bFolstein

interval. Mini-Mental State Examination.

DISCUSSION We believe that this study is the first to explore the relationship between reports of pain and both patient and caregiver factors in a sample of community-dwelling patients with dementia. It is, thus, especially useful to discuss the implications of our findings in comparison with data in the literature from either longterm-care settings or studies of cognitively intact patients. First, in this study, patient report of the presence of pain was not significantly associated with the degree of cognitive impairment. This finding is consistent with previous research done in other settings, such as the nursing home or assisted living where cognitive impairment in the mild to moderate stages was not associated with a patient’s report of the presence of pain.7,25 These findings support recent recommendations made in the American Geriatrics Society’s Guideline on the Management of Persistent Pain in Older Adults to directly ask patients about pain, even those with cognitive impairment.9 Clinicians should feel confident in querying patients with mild to moderate dementia about their pain and understand that patients do not appear to report

more or less pain as a result of mental status alone. Second, in this study of community-dwelling persons with dementia, we found no association between patient self-report of pain and the patient’s mood, function, or other patient factors that we measured. Interestingly, other factors associated with the report of patient pain in persons with cognitive impairment have been most extensively studied in the nursing home and have yielded varying results. Patient report of pain in the nursing home has been associated with greater functional impairment7,12 and depressive signs and symptoms12 in several studies, but not in others.1,25 The conflicting results may be related to the variability in the intensity of pain, the underlying burden of medical comorbidities, or the pain assessment method (patient report, caregiver report, observation scales). Many of these associations were modest, and not all analyses that found associations included a multivariate analysis.7 Third, our finding that the patient’s report of pain was not associated with the psychological health of the caregiver, such as depressed mood or caregiver stress, stands in contrast to studies of the family caregivers of cancer patients. For ex-

TABLE 5. LOGISTIC REGRESSION OF CAREGIVER REPORT OF PATIENT PAIN BY SIGNIFICANT PATIENT AND CAREGIVER FACTORS IN THE UNIVARIATE ANALYSIS AND DEMOGRAPHIC VARIABLES, EXCLUDING CMAIa (n  115 DYADS) Variable Caregiver age Caregiver being male Education caregiver Caregiver depressed Patient not depressed aCohen-Mansfield bConfidence

Beta

p

Odds ratio

Lower 95% CIa

Upper 95% CIb

0.02 0.18 0.12 1.02 0.63

0.146 0.720 0.051 0.029 0.230

0.98 1.195 1.13 2.77 1.88

0.95 0.45 1.00 1.12 0.67

1.01 3.16 1.27 7.17 5.24

Agitation Inventory. interval.

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FACTORS ASSOCIATED WITH PAIN IN DEMENTIA TABLE 6.

LOGISTIC REGRESSION OF CAREGIVER REPORT OF PATIENT PAIN BY SIGNIFICANT PATIENT AND CAREGIVER FACTORS IN THE UNIVARIATE ANALYSIS AND DEMOGRAPHIC VARIABLES, EXCLUDING CAREGIVER DEPRESSION (n  115 DYADS)

Variable Caregiver age Caregiver being male Education caregiver Patient not depressed CMAIb aConfidence

Beta

p

Odds ratio

Lower 95% CIa

Upper 95% CIa

0.02 0.372 0.12 0.62 0.03

0.199 0.456 0.061 0.230 0.049

0.98 1.45 1.12 1.87 1.03

0.95 0.55 0.99 0.68 1.00

1.01 3.59 1.27 5.23 1.06

interval. Agitation Inventory.

bCohen-Mansfield

ample, patient pain report has been found to be associated with worse health in the family caregivers of oncology outpatients.26 In that study, family caregivers of patients who reported pain had significantly more depression than with pain-free patients. It is possible that since caregivers of patients with dementia already experience a higher burden of stress and depression than nondementia caregivers,27 the impact of patient pain is less in this population. While some research exists on factors associated with the report of patient pain, as discussed above, few if any studies examine patient and caregiver factors associated with a family caregiver’s report of patient pain. The identification of such variables is extremely important as health care providers come to depend on the caregiver’s report of patient pain as the patient’s cognitive state declines. In our study, increasing levels of patient agitation were significantly associated with the higher rates of caregiver’s reporting patient pain. Specifically, for each 1-point increase in the CMAI, we found a 3% greater likelihood of the caregiver to report the patient to be in pain. Pain identified through patient observation scales or proxy report (both family and nonfamily caregivers) has been associated with agitated behavior in both long-term-care facilities and in adult day care centers, respectively.28,29 This association between agitation and pain suggests that both professional and family caregivers may be interpreting the presence of agitation or behavioral changes as indicators of pain in patients who may be having difficulty communicating verbally about their pain. In fact, many experts in the field recommend an analgesic trial for empirical treatment of agitation.30 Caregivers in our study who were depressed were significantly more likely to report that the

patient was in pain than caregivers who were not depressed. In contrast, caregiver stress was not associated with the caregivers report of patient pain. As the current analyses are cross-sectional in design, we cannot determine the direction of causality. It is possible that untreated or undertreated pain in the patient contributes to depression in the caregiver. On the other hand, it also is possible that depressed caregivers view the experience of the patient through a “dark lens” and report pain at too high a rate. This latter interpretation would be consistent with a number of other studies, including our own work on discord between patient and caregiver reports of pain,8 other work on caregivers rating pain higher than reported by cognitively intact patients with cancer,31 and a recent study of caregivers with higher burden rates reporting the quality of life of patients with mild to moderate dementia lower than the patients rated it themselves.32 It is also worth noting that the measure of patient agitation in this study, the CMAI, was reported by the family caregiver and was significantly correlated with caregiver depression, raising yet another possible complexity—the agitation rating could have been influenced by caregiver depression. There are several limitations to this study. First, our self- and caregiver’s report of patient pain was based on a single-point estimate of “pain right now.” Second, rates of self-report of pain by patients are lower than those previously published studies of persons with dementia in other settings such as the nursing home, which may have influenced the results. Third, while PEACE subjects were similar demographically to other patients in our geriatrics practice, they comprise a convenience sample from a single clinic at one institution. Fourth, a majority of participants are African American women, which may limit the

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generalizability of the findings to other populations. In conclusion, this study adds new and clinically relevant information on caregiver and selfreport of pain for persons with dementia who reside in the community. Patient report of pain was not associated with any patient factors, including patient depression, functional status, and extent of cognitive impairment. Clinicians should ask patients with dementia about pain directly and treat its presence accordingly. Caregiver report of patient pain was associated with reports of increased patient agitation and the caregiver being depressed. We would not want clinicians to discount the pain reports of depressed caregivers. Instead, we urge clinicians to routinely ask about and treat pain, but also to routinely assess patient agitation and caregiver depression. Additional research is needed to better understand the complex relationships between these factors in community-dwelling patients with dementia, including how these factors may be affected by the presence of family caregivers rather than professional care providers in nursing homes.

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ACKNOWLEDGMENTS Funding source: Robert Wood Johnson Foundation, Geriatric Academic Program Award from the National Institutes on Aging to the University of Chicago, K12AG00488-10, and The Hulda B. and Maurice L. Rothschild Foundation.

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Address reprint requests to: Dr. Joseph W. Shega The University of Chicago Department of Medicine, Section of Geriatrics 5841 South Maryland Avenue (MC 6098) Chicago, IL 60637 E-mail: [email protected]