Summit Meeting on Breast Cancer amongAfrican-American Women

Supplement to Cancer

Quality of Life Concerns in Patients with BreastCancerEvidence for Disparity of Outcomes and Experiences in Pain Management andPalliative Care Among African-American Women

Richard Payne, M.D.1

Eduardo Medina, B.A.1

James W. Hampton, M.D.2

1 Department of Pain and Palliative Services, Me-morial Sloan-Kettering Cancer Center, New York,New York.

2 Department of Medicine, University of OklahomaCollege Of Medicine, Oklahoma.

Presented at the Summit Meeting on Breast Can-cer Among African-American Women, Washington,DC, September 8–10, 2000.

Address for reprints: Richard Payne, M.D., Depart-ment of Neurology, Memorial Sloan-Kettering Can-cer Center, 1275 York Avenue, New York, NY10021; Fax: (917) 432-2309; E-mail: payner@mskcc.org

Received September 14, 2002; accepted Septem-ber 14, 2002.

BACKGROUND. African-American women are at higher risk for breast cancer mor-

tality compared with their white counterparts. Furthermore, African-American

women present for diagnosis and treatment later in the disease process. It may be

expected that this greater disease burden would impose more symptoms com-

pared with women who present with earlier stage disease. However, the effect of

breast cancer on the quality of life of African-American women largely has been

unexplored.

METHODS. A qualitative literature review was conducted to identify racial dispari-

ties in the palliative care of patients with cancer and their impact on quality of life

for African-American women. A Medline search was done encompassing the years

between 1985 and 2000 and included the following search terms: breast cancer,

palliative care, pain management, quality of life, health care disparities, and African

Americans. Relevant articles were read and summarized for inclusion in this

review.

RESULTS. Differences in treatment patterns, pain management, and the use of

hospice care exist between African-American women and women in other ethnic

groups. Explanations for these differences have not been researched well. In

addition, the emotional, social, and other aspects of quality of life for African-

American women with breast cancer are not well understood, in part due to the

absence of a standardized quality-of-life measure.

CONCLUSIONS. Physicians and other health care providers must be educated better

about pain management and hospice care and, in turn, must inform their patients

better about these issues. Physicians’ and researchers’ considerations of the influ-

ence of race and ethnicity on quality of life are critical. Furthermore, future

research should be focused on the establishment of a standardized measure for

quality of life that better encompasses its social, spiritual, and emotional aspects.

Quality-of-life measures should be incorporated into routine health surveillance

mechanisms, with an increased emphasis on minority and other under-served

populations. Cancer 2003;97(1 Suppl):311–7. © 2003 American Cancer Society.

DOI 10.1002/cncr.10175

KEYWORDS: breast cancer, palliative care, pain management, quality of life, AfricanAmericans.

Breast cancer is expected to be the most common malignancy(31%) among African-American women in 2001.1 In African-

American women, about 19,300 new diagnoses of breast cancer areexpected in 2001, with 5800 women expected to die. Cancer is thesecond leading cause of death among African-American women and

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© 2003 American Cancer Society

is surpassed only by heart disease. Breast cancer ac-counts for 19% of all cancer deaths among African-American women (second only to lung cancer). Can-cer mortality among African-American women isapproximately 28% higher compared with mortalityamong white women. Although African-Americanwomen are more likely to be diagnosed later in thedisease process,2 white women still experience higher5-year relative survival rates,3 regardless of diseasestage at the time of diagnosis.1,4 Despite these facts,quality of life for African-American women with ad-vanced breast cancer remains poorly understood.

Quality of Life and Palliative CareThe concept of health-related quality of life can bedefined as the extent to which a patient’s usual orexpected physical, emotional, and social well beingare affected by a medical condition or its treatment.5

This concept of quality of life is multidimensional andmultidisciplinary in the sense that it affects the totalityof the human experience: psychosocial, spiritual, fi-nancial, and physical. Considerations of the physicalcomponents of quality-of-life experience for patientswith breast cancer are dominated by the extent towhich symptoms like pain, fatigue, nausea, etc., aremanaged or controlled. Psychosocial distress and dis-tress regarding loss of function, fear of future events,contemplation of physical distress, or even death re-lated to having a serious disease like cancer also arecritical components of quality-of-life considerations.Psychosocial and emotional concerns often mergewith spiritual matters, particularly concerns about themeaning of the disease in the context of the patient’sgeneral philosophical outlook on life and death andthe contemplation of existential issues, such as theextent to which one’s life has been fulfilled or whetherimportant relationships can be closed in a meaningfulway, also must be considered and assessed to definequality of life. Finally, financial issues related to thedirect and indirect costs of medical treatments; theloss of work productivity and time, etc.; and the degreeto which their illness or care is a burden to family andloved ones are important additional considerationsthat most individuals evaluate when contemplatingtheir overall quality of life.

When it is defined in this broad manner, it isunclear whether African-American women with breastcancer have fundamentally different quality-of-lifeconsiderations compared with women of other racialand ethnic groups. There is very little research in thisarea, and the extant studies suggest more questionsthan answers. For example, one study suggests thatblack women are more likely to have an externalhealth locus of control in health matters; that is, they

are much more likely to feel that chance or others caninfluence events affecting their quality of life ratherthan their actions alone.6 Therefore, it may be hypoth-esized that the extent to which patients control themediation of spiritual, psychological, emotional, andfinancial factors that have an impact on their qualityof life may be different for black women comparedwith white women; thus, fundamental experiences in-fluencing quality of life may be different, even forwomen with the same stage of disease or the samedegree of physical symptoms.

Palliative care is defined as the active, total care ofpatients with disease that is not responsive to curativetreatment7 and should integrate symptom and paincontrol with spiritual, psychological, social, and finan-cial factors. Nonetheless, concerns with quality of lifefor the patient with cancer often centralize aroundsymptom relief and end-of-life care—specifically, painmanagement.

Influence of Pain Management in Quality of LifeAmong all of the physical symptoms that can be ex-perienced by patients with cancer, pain has the abilityto eclipse all other aspects of health-related quality-of-life experiences. Put another way, it is difficult toimagine how we can have a good quality of life if painand other physical symptoms are not controlled. Un-fortunately, pain is a common problem, affecting ap-proximately 25% of newly diagnosed patients andnearly 90% of patients with advanced disease.8 Pain iscaused by a direct effect of the disease in 75% ofpatients; in approximately 25% of patients, the pain iscaused by cancer treatments— chemotherapy, radia-tion therapy, or surgery. The fundamental principlesof pain assessment are listed in Table 1.

Patients with breast experience predictable pat-terns of pain that can occur in defined syndromes.8

These are shown in Table 2. Local breast pain may bea diagnostic clue indicating the presence of breastcancer. Other pain syndromes in patients with breastcancer include postmastectomy pain, brachial plex-opathy caused by direct tumor infiltration or irradia-tion, metastatic bone pain, myalgias, and arthralgiasassociated with chemotherapy. Postmastectomy painis a well-described phenomenon that obviously isunique to patients with breast cancer.9,10 It occurs in5–20% of women and appears to be more commonamong women who undergo axillary dissection orwhen postoperative complications occur, such as se-roma or hematoma. This pain can be quite disablingand can be distinguished by its quality and distribu-tion from brachial plexopathy pain, which usually car-ries a more ominous prognosis. Treatment includesthe administration of analgesics, including opioids for

312 CANCER Supplement January 1, 2003 / Volume 97 / Number 1

severe pain, physical therapy to maintain maximumrange of motion about the shoulder, and reassuranceof the patient that the pain is not caused by diseaserecurrence.

Aggressive pain management is important for pa-tients with malignant disease, because pain compro-mises the ability to undergo cancer treatment andmedical procedures. Recent studies suggest that un-relieved pain can adversely influence survival,11–13 andeffective treatment is defined as treatment that im-proves the ability to function. Pain is treated in pa-tients with cancer by eliminating the cause of painwhenever possible: supporting the patient’s use ofself-coping methods of pain control (e.g., massage,distraction, prayer) and the use of pain medications inappropriate doses and the prevention and treatmentof side effects with the goals of relieving pain andimproving function.

Several studies have documented ethnic and ra-cial disparities in pain treatment. In a series of stud-ies,14 –16 Todd et al. observed that Hispanic patients inEast Los Angeles and African-American patients inAtlanta who entered emergency rooms within 6 hoursof sustaining a long-bone fracture had an approxi-mately two-fold to three-fold greater chance of receiv-ing no pain medication compared with white patientswho had similar injuries. This racial disparity persisted

even when pain intensity or insurance status of blackpatients and white patients were equivalent.

Pain treatment for patients with cancer is associ-ated with these same disparities. A 1994 analysis of theEastern Cooperative Oncology Group’s data17 sug-gested that clinics serving primarily minorities werethree times more likely to offer inadequate pain man-agement. That study also identified patient gender(female) as a factor that predicted inadequate painmanagement. A follow-up study in 199718 found that65% of a population of African-American and Hispanicpatients with a range of malignancies, including breastcarcinoma, did not receive guideline-recommendedprescriptions for analgesics compared with 50% ofnonminority patients. The Office of Minority Healthreported19 that almost 62% of patients at institutionsserving predominantly African-American patientswere prescribed inadequate analgesics. Anderson etal. found that almost one-third (31%) of African-Amer-ican patients received pain medications of insufficientstrength to manage their pain.20 Furthermore, it wasfound that physicians underestimated the severity ofpain for 74% of African-American patients and forwomen in general. Three major barriers to improvingpain management are reported consistently: patientreluctance to report pain for a variety of reasons; in-adequacies of the medical team’s ability to assesspain; and health system barriers, such as the high costand relatively unavailability of pain medications, es-pecially for minority patients.20 In general, physiciantraining in pain management and palliative care isinsufficient.21 At least one study22 has suggested that,even if pain is assessed correctly and an appropriatemedication is prescribed, African Americans may notbe able to obtain essential medications, such as mor-phine. In that study, Morrison et al. demonstrated thatonly 25% of pharmacies in predominantly nonwhiteNew York neighborhoods stocked morphine, whereas72% of pharmacies in affluent white neighborhoodshad sufficient stocks of these drugs.

Ethnic-Racial Issues in Pain ManagementRace and ethnicity can influence a number of factorsthat affect pain management and analgesic response.These can be grouped into three areas: 1) patient-related factors, 2) pain-related factors, and 3) drug-related factors. Patient-related factors include the ex-pectations of the patient regarding pain and paintreatment; the nature of the patient’s self-report ofpain; the degree of psychological distress experiencedby the patient; and genetic influences on drug absorp-tion, metabolism, and elimination. Although each ofthese patient-related factors theoretically may be in-fluenced by racial or genetic variables, the few studies

TABLE 1Principles of Pain Assessment

I. Take a complete historyA. Fully evaluate the pain complaint

1. Use simple self-report scales (0–10 scales or visual analogue scales)2. Evaluate factors that make pain better or worse

a. Ask about incident or movement-related painb. Ask about other breakthrough episodes of pain

B. Evaluate the cancer history1. Was pain an initial symptom of cancer?

C. Evaluate psychosocial aspects of the pain and the meaning of the pain for thepatient

1. How distressed is the patient?2. Is there a history of chronic pain from nonmalignant origin? How has the

patient coped with chronic pain in past?2. Is there a history of depression or other affective illness or substance abuse?3. Evaluate patient and family attitudes toward the use of controlled

substances (especially opioids)II. Perform a careful physical and neurologic examination

A. Evaluate pain sites and other common referral sitesB. Evaluate for primary or secondary sources of musculoskeletal painC. Perform focused neurologic examination to assess motor, sensory, and

autonomic findings associated with pain of neuropathic origin.III. Review radiographic and laboratory studies to stage disease and confirm cause

and nature of painIV. Reevaluate pain and responses to treatment at frequent interval and reassess

the extent of disease for all new or worsening reports of painV. Assess the impact of pain on psychological well being and physical function

Quality of Life/Payne et al. 313

available were focused in the area of genetic influ-ences on drug metabolism.

In a review of the literature,23 Johnson found sup-port for the premise that only pharmacokinetic pro-cesses that are mediated biologically or biochemicallyhave the potential to exhibit differences between ra-cial or ethnic groups. Examples of these pharmacoki-netic processes include 1) bioavailability for drugs thatundergo hepatic first-pass metabolism, 2) proteinbinding, 3) volume of distribution, 4) hepatic metab-olism, and 5) renal tubular secretion. Though the ex-isting literature is sparse, some studies have observedracial differences in analgesic pharmacology. For ex-ample, the cytochrome p450 isoenzyme 2D6 is re-sponsible for metabolizing a number of medications,including codeine. Codeine is biotransformed to mor-phine through the action of the 2D6 isoenzyme. Tenpercent of the white population and about 0.5% of theblack and Asian populations lack the 2D6 enzyme;thus, they obtain no analgesic effect from codeine.24

In another study, Zhou et al.25 showed a clinicallyand statistically significant difference in renal elimi-nation of morphine between Chinese patients andCaucasian patients, whereas Chinese patients clearedmorphine and its principle metabolites, 3-glucoronide

and 6-glucoronide, more efficiently from their kidneyscompared with Caucasian patients. The 6-glucoronidemetabolite of morphine is at least twice as potent asmorphine itself in producing analgesia. Therefore,these differences in renal elimination may have im-portant clinical consequences. The majority of studiesevaluating racial and ethnic effects on pharmacokinet-ics have focused on comparisons between Asians andCaucasians, with only a limited number of studiescomparing African Americans and Caucasians. Thesefew studies have produced mixed results,23 althoughthey indicate clearly that racial-ethnic differences doexist.

Pain-related factors that influence analgesic re-sponse include the rate and tempo of the tissue injurycausing pain, characteristics of pain (e.g., steady vs.intermittent, movement-related pain, or incidentpain), and the pathophysiology of pain (nociceptivevs. neuropathic). Drug-related factors also can influ-ence pain management and analgesic response. Theefficacy of the drug can be influenced by the charac-teristics of the pain and the drug class. For example,inflammatory pains are treated best with aspirin andother nonsteroidal antiinflammatory agents (e.g., ibu-profen). However, these drugs have ceiling affects to

TABLE 2Common Pain Syndromes in Patients with Breast Carcinoma

Pain syndrome Clinical characteristics

I. Musculoskeletal pain (bone pain syndromes) Metastatic bone pain is the most common pain syndrome associated with direct tumor involvement1. Vertebral body metastasis Focal pain in neck or back, risk of spinal cord compression2. Pelvis and long bone metastasis Risk of pathologic fracture with weight bearing; early orthopedic consultation usually required3. Skull-base metastasis Head pain usually severe with associated cranial nerve defects

II. Neuropathic pain Pain usually severe and associated with spread of tumor from lymph nodes and organs to peripheral nerve structures.Plexopathies

1. Brachial plexopathy Most common with breast and lung carcinoma; pain in shoulder, radiating into arm and hand with associatednumbness and weakness; bilateral pain indicates risk for spinal cord compression; can be a complication ofradiotherapy to the region

2. Lumbosacral plexopathy Most common with renal, uterine, and colon carcinoma; pain in back radiating into leg: bilateral pain indicates riskfor spinal cord compression: can also be a complication of radiotherapy to the pelvis

Spinal cord compression Neurologic emergency; pain proceeds neurologic dysfunction by days or weeks; most common with prostate, breast,lung carcinomas, which metastasis to spinal vertebral bodies

Meningeal carcinomatosis Pain can be focal or radicular in nature; most common with lymphomas, leukemias, breast, and sarcomasPostsurgical pain syndromes

1. Postmastectomy May occur in up to 20% of women; more common with axillary dissection; injury to intercostal-brachioradial nerveimplicated; can be distinguished from brachial plexopathy on clinical grounds

Chemotherapy-related pain Paresthesia and numbness in feet, progressing to fingers in later stages; associated with sensory loss and subjectivesensation of numbness; vinca alkaloids, cisplatinum, and toxoids are most common offenders; nerve damage isdose related and generally reversible upon discontinuation of chemotherapy

III. Abdominal and pelvic visceral pain Pain usually associated with tumor infiltration or radiotherapy to abdominal and pelvic organs; pancreatic and upperGI sources of pain produce periumbilical, crampy pain often referred to back; pain is often associated by smalland/or large bowel obstruction with nausea and emesis

Perineal and perirectal pain produced by infiltration of tumor or radiation-induced fibrosis of presacral spacesinvolving the sacral plexus; sitting exacerbates perineal pain in most patients

GI: gastrointestinal.

314 CANCER Supplement January 1, 2003 / Volume 97 / Number 1

their analgesic efficacy and, thus, are most effective inmanaging pain of mild-to-moderate intensity. Addi-tional drug-related factors include the potency of thedrug, the appropriateness of the dose given, and re-ceptor-selective effects. Although gender-related in-fluences of drug response have been documented, todate, no racial or ethnic differences in analgesic re-sponsiveness have been reported.

Gender Issues in Pain ManagementMen and women do not differ with regard to painthresholds, although there are some differences inhow men and women react to pain. A specific class ofopioid medications seems to have gender specific ef-fects, producing a greater intensity and duration ofpain relief in women compared with men. In ablinded, randomized study,26 women and men weregiven the mixed agonist-antagonist opioid nalbuphineto treat postoperative dental pain. The women had amuch more robust analgesic response compared withthe men, experiencing greater peak analgesia andlonger duration. In fact, almost 2 hours after admin-istration, the men reported that their pain had re-turned to baseline levels, whereas the women contin-ued to report pain relief. This gender specific effectwarrants additional research.

In summary, acute and chronic pain usually is notmanaged optimally in many minority patient groups,including African-American men and women. In thismilieu of undertreatment, minority groups are at aparticular risk. Possible explanations for these dispar-ities in pain treatment and analgesic response includephysician bias, training deficiencies, behavioral andself-reporting factors among patients, and genetic andbiological differences in response, although the latterare likely to be relatively minor contributions to thesepain-related disparities. However, additional researchis necessary to understand properly the roles of raceand ethnicity in pain management as well as its rela-tion to overall quality of life.

Hospice CareAnother area in which ethnic and racial influences onquality of life are of concern is that of hospice careutilization. Despite their higher mortality rate fromcancer compared with whites and other minoritygroups,1 African Americans under use hospice andpalliative care. Fewer than 10% of the 700,000 patientswho receive hospice care in the United States areAfrican American.27 According to the last publisheddata, 93% of patients using the Medicare hospice ben-efit are white.28 This under utilization appears to bejust as prevalent among African-American womenwith end-stage breast cancer.

Few data have been collected to explain this dis-parity. Some evidence suggests that the under use ofhospice care by African Americans is attributable tothe disproportionate gap in education about andknowledge of the hospice programs (i.e., what theyare, how they provide assistance, and how they func-tion) both for patients and for the providers who carefor African-American patients.29,30 Many patients sim-ply do not know that hospice care is available or howto gain access to hospice care. Cultural and familybeliefs also may limit the use of hospice care.29,30

Among many African Americans, the family (usuallyanother female) is expected to take care of the patientwith terminal illness. To compound the matter, manyphysicians are not familiar with hospice care, partic-ularly primary care physicians. The lack of educationamong physicians is evidenced by the fact that hos-pice care is being given only in the last few days oflife—the average hospice stay is less than 2 weeks formost patients despite the fact that Medicare eligibilityrules allow for up to 6 months of use.27,28

African Americans may find hospice care inacces-sible for economic reasons. For example, Medicaredata show that � 10% of the 38.8 million people whoare enrolled in Medicare are African Americans.31

Some have suggested that the mechanisms for enroll-ment are weighted against minorities. For example,Medicare Part A enrollment is a passive process, oc-curring automatically upon eligibility for and activa-tion of Social Security benefits. Enrollment in Part B,however, requires that a patient completes enrollmentinformation and, sometimes, incurs additional costs.If patients are not eligible for Social Security benefitsand have poor access to primary care (where enroll-ment for Part B often occurs), then they are at adisadvantage in qualifying for Medicare hospice ben-efits.

Treatment Procedures and OutcomesQuality of life for African-American women withbreast cancer is affected not only by under use ofhospice care but also by their decisions regardingscreening and treatment. Cultural and ethnic differ-ences may have an impact on these decisions. Forexample, African-American women with breast cancerare more likely to have an external health locus ofcontrol compared with white women who have breastcancer.6 Lannin and his associates found that a ma-jority of African-American women with late-stage pre-sentation believed that surgery should be avoided be-cause it would allow the cancer to spread.32,33 Manychose alternative treatments, including herbs, chiro-practors, and even prayer, instead of conventionaltreatments. Many were unwilling to seek treatment for

Quality of Life/Payne et al. 315

fear that it would change their relationships with themen in their lives due to changes in their appearanceor expected financial burdens. Although these African-American women were from predominantly rural re-gions, these data illustrate the principle that such cul-tural and ethnic beliefs can have an impact ontreatment decisions and, consequently, on the qualityof life associated with the outcomes of those deci-sions. Some early data have suggested that African-American women were less likely than white womento undergo surgical therapies,4,34 but more recent datasuggest that, when disease stage is taken into consid-eration, this difference disappears.35 However, Afri-can-American women are more likely than whitewomen to choose modified radical mastectomies overbreast-conserving surgery.35,36 Other data have shownthat African-American women are more likely to re-ceive adjuvant chemotherapy compared with whitewomen.4,37

Some of these differences may be related to dis-ease stage, to racial differences in preoperative andpretreatment information provided patients by theirphysicians, and possibly to patients’ access to care.Generational, cultural, and socioeconomic factors in-fluence patients’ treatment decisions as well. Researchis needed to identify the specific factors in women’sdecisions for treatment and the impact of such deci-sions on the quality of life of African-American pa-tients with breast cancer.

In addition, differences likely exist among physi-cians’ attitudes and perspectives toward end-of-lifecare. Studies are needed to determine whether per-sonal physician preferences have an impact on treat-ment decisions regarding pain management, symp-tom management, and quality of life.

Quality of Life and Opportunities for ImprovingUnderstanding and CareThe existing data demonstrate that physicians, nurses,other health care practitioners, and community laypeople must be educated better about quality-of-lifeissues, including the critical importance of adequatepain and symptom management and the role of hos-pice care in terminally ill patients. Despite consider-able concern for the quality of life for patients withcancer, research in the area has focused on its physicalaspects, such as pain management, and on demon-strating the existence of racial or ethnic disparities.However, there are many aspects of quality of life,including psychosocial, social, and spiritual, that arenot understood well, especially among African Amer-icans and other minority groups. Future quality-of-lifestudies should focus on these areas and should pay

particular attention to how these are manifested inminorities.

The measurement of quality of life also is of con-cern. Although a number of tools have been developedto assess quality of life for health concerns (e.g., theSF-36),38 many of these are oriented toward pain andother symptoms and neglect the psychosocial, social,and spiritual aspects that are important to patientswith advanced malignant disease. A standardizedmeasure that encompasses each of these areas wouldbenefit the study of quality of life significantly. Finally,the inclusion of quality-of-life measures into routinehealth surveillance systems, such as the NationalHealth and Nutrition Examination Survey and the Be-havioral Risk Factor Surveillance System, would pro-vide a better understanding of quality-of-life issues. Inconjunction, efforts must be made to better representunderserved populations in the samples surveyed.

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