A Retrospective Pilot Study of African-American and Caucasian Nursing Home Residents with Dementia Who Died From Cancer

To the Editor:

The management of pain at the end of life for nursing home residents could be much improved,¹ and severe cognitive impairment further impedes the pain assessment process. Few studies have focused on the relationships among older adults with cognitive impairments, race, and cancer pain.² The purpose of this pilot study was to explore the differences between African-American and Caucasian nursing home residents’ pain management at the end of life.

Recently, there has been an interest in discerning the differences in the pain experiences between African Americans and Caucasians.² These studies document that African Americans report more pain than Caucasians regardless of age,³ type of pain,⁴ or setting in which management occurred.⁵ Portenoy et al.⁶ showed that non-Hispanic Blacks and Hispanics reported more severe pain than Caucasians. Evidence exists that, among ethnic minority populations, pain severity is underestimated,⁷ and pain is undermedicated.⁵ Few published studies have focused on older adults, race, and pain,⁸ and even fewer on older adults with dementia and cancer.

Subjects

Residents from nine nursing homes who died from cancer between January 1, 2003 and July 1, 2009 and who had dementia were included in this study. Individuals were selected from the Minimum Data Set 2.0 (MDS) (http://www.cms.hhs.gov/quality/mds20/). Exclusion criteria were an inability to determine the cause of death and incomplete medical records. A total of 55 subjects who met eligibility requirements were included. This pilot study received institutional review board approval with exempt status from The University of Tennessee Health Science Center.

Measurements

Pain.

The Discomfort Behavior Scale (DBS) was developed as an alternative to self-report for older adults with cognitive impairments.⁹ The DBS is a 17-item instrument, available online (http://prc.coh.org/PainNOA/DBS_Scoring%20Grid.pdf), derived from assessment items in the MDS 2.0 that address behaviors that may indicate possible pain.

Cognition.

The Cognitive Performance Scale (CPS)¹⁰ was developed from five MDS items and is reported as both reliable and valid when an individual is trained in its use.¹¹

Opioid Intake.

Equivalent dose units of opioid analgesics (EDUs) were calculated using the Equianalgesic Opioid Conversion Ratios for the Patients Previously Receiving Other Opioids (Arkansas Medicaid) online calculator.¹²

Protocol

The cancer diagnoses were determined from the Centers for Disease Control (CDC) top 10 cancers for all races and genders in 2004.¹³ Second, each medical record was retrieved to determine a positive diagnosis of Alzheimer’s disease, Lewy body dementia, vascular, or mixed dementia. Third, a CPS score was calculated from the admission MDS. Fourth, a DBS score was calculated from the most recent MDS before death. Lastly, the cause of death as malignant cancer was confirmed in the medical record.

Statistical Analysis

Differences between the groups were compared by mean difference and 95% confidence intervals (CI). Effect size was calculated using Cohen’s d. Calculations were performed using SAS version 9.2 (SAS Institute Inc., Cary, NC). A P-value of <0.05 was considered statistically significant.

Results

This sample had a mean age of 86.36 (SD 7.84) years. African Americans comprised approximately 29% (n = 16), and there were slightly more women (n = 30) than men (n = 25). We found that African-American subjects had a significantly higher mean DBS score compared with Caucasian subjects (P = 0.009; 95% CI 1.93—12.61). Cohen’s d = 0.67 indicated a large effect size. We found no significant difference between the mean CPS scores or mean total EDUs (Table 1).

Table 1.

Group Characteristics

Instruments	Race	n	Mean	SD	SEM
DBSa	African American	16	10.81	14.42	3.61
	Caucasian	39	3.54	5.49	0.88
CPS	African American	16	3.94	1.81	0.45
	Caucasian	39	3.67	1.66	0.27
EDU	African American	16	9.12	11.81	2.95
	Caucasian	39	9.87	17.67	2.73

SD = standard deviation; SEM = standard error of the mean; DBS = Discomfort Behavior Scale score; CPS = Cognitive Performance Scale score; EDU = equivalent dose units of opioid analgesic.

^aDifference between the means significant at P < 0.01.

Discussion

Pain and distress may be different across racial groups, even in the context of dementia, and more research is needed to confirm and understand this phenomenon. Our preliminary results support previous literature that African Americans may have different pain experiences from Caucasians.

Limitations in this pilot study include the convenience sample being selected over six years, with multiple providers coding the MDS data, charting diagnoses, and medication administration. An assumption is that the data were coded and entered correctly in the nursing home database, MDS records, and the medication administration records. The sample was modest in size, nonrandomly sampled, and not fully representative of the older adult population. The DBS was not originally tested in a sample that included African Americans or individuals with only cancer, and this is the first pilot study that we are aware of to employ its use in this population. There was no way to know if DBS scores were influenced by unidentified extraneous variables. We collected opioid administration information only over the last two weeks of life. We used terminal cancer pain as our proxy pain variable and did not include potential comorbidities that may have contributed to pain. Our preliminary findings and small sample size did not accommodate covariate analysis.

A second discussion point is that the MDS has limitations when used as a research tool. Specifically, rater training and bias can affect MDS validity because MDS data are based on self-report and/or the opinion of the nurse who completes the MDS.¹⁴ Our findings could be attributed to bias among the nurses completing the MDS in each facility.

These limitations notwithstanding, we found differences in DBS between African-American and Caucasian decedents without differences in mean opioid intake. Tolerance to opioid medications could not be ascertained in this setting, and these findings require additional research. Future studies also are needed to validate the DBS among racially diverse populations and among individuals with cancer pain. These preliminary findings emphasize the need to better understand the differences between pain experience, dementia, and race.