Quality of life concerns in patients with breast cancer
Evidence for disparity of outcomes and experiences in pain management and palliative care among African-American women
African-American women are at higher risk for breast cancer mortality 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 compared 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.
A qualitative literature review was conducted to identify racial disparities 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.
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.
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 influence 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.
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 are expected in 2001, with 5800 women expected to die. Cancer is the second leading cause of death among African-American women and is surpassed only by heart disease. Breast cancer accounts for 19% of all cancer deaths among African-American women (second only to lung cancer). Cancer mortality among African-American women is approximately 28% higher compared with mortality among white women. Although African-American women are more likely to be diagnosed later in the disease process,2 white women still experience higher 5-year relative survival rates,3 regardless of disease stage at the time of diagnosis.1, 4 Despite these facts, quality of life for African-American women with advanced breast cancer remains poorly understood.
Quality of Life and Palliative Care
The concept of health-related quality of life can be defined as the extent to which a patient's usual or expected physical, emotional, and social well being are affected by a medical condition or its treatment.5 This concept of quality of life is multidimensional and multidisciplinary in the sense that it affects the totality of the human experience: psychosocial, spiritual, financial, and physical. Considerations of the physical components of quality-of-life experience for patients with breast cancer are dominated by the extent to which symptoms like pain, fatigue, nausea, etc., are managed or controlled. Psychosocial distress and distress regarding loss of function, fear of future events, contemplation of physical distress, or even death related to having a serious disease like cancer also are critical components of quality-of-life considerations. Psychosocial and emotional concerns often merge with spiritual matters, particularly concerns about the meaning of the disease in the context of the patient's general philosophical outlook on life and death and the contemplation of existential issues, such as the extent to which one's life has been fulfilled or whether important relationships can be closed in a meaningful way, also must be considered and assessed to define quality of life. Finally, financial issues related to the direct and indirect costs of medical treatments; the loss of work productivity and time, etc.; and the degree to which their illness or care is a burden to family and loved ones are important additional considerations that most individuals evaluate when contemplating their overall quality of life.
When it is defined in this broad manner, it is unclear whether African-American women with breast cancer have fundamentally different quality-of-life considerations compared with women of other racial and ethnic groups. There is very little research in this area, and the extant studies suggest more questions than answers. For example, one study suggests that black women are more likely to have an external health locus of control in health matters; that is, they are much more likely to feel that chance or others can influence events affecting their quality of life rather than their actions alone.6 Therefore, it may be hypothesized that the extent to which patients control the mediation of spiritual, psychological, emotional, and financial factors that have an impact on their quality of life may be different for black women compared with white women; thus, fundamental experiences influencing quality of life may be different, even for women with the same stage of disease or the same degree of physical symptoms.
Palliative care is defined as the active, total care of patients with disease that is not responsive to curative treatment7 and should integrate symptom and pain control with spiritual, psychological, social, and financial factors. Nonetheless, concerns with quality of life for the patient with cancer often centralize around symptom relief and end-of-life care—specifically, pain management.
Influence of Pain Management in Quality of Life
Among all of the physical symptoms that can be experienced by patients with cancer, pain has the ability to eclipse all other aspects of health-related quality-of-life experiences. Put another way, it is difficult to imagine how we can have a good quality of life if pain and other physical symptoms are not controlled. Unfortunately, pain is a common problem, affecting approximately 25% of newly diagnosed patients and nearly 90% of patients with advanced disease.8 Pain is caused by a direct effect of the disease in 75% of patients; in approximately 25% of patients, the pain is caused by cancer treatments—chemotherapy, radiation therapy, or surgery. The fundamental principles of pain assessment are listed in Table 1.
Table 1. Principles of Pain Assessment
|I. Take a complete history|
| A. 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 pain|
| b. Ask about other breakthrough episodes of pain|
| B. Evaluate the cancer history|
| 1. Was pain an initial symptom of cancer?|
| C. Evaluate psychosocial aspects of the pain and the meaning of the pain for the patient|
| 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 sites|
| B. Evaluate for primary or secondary sources of musculoskeletal pain|
| C. 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 pain|
|IV. Reevaluate pain and responses to treatment at frequent interval and reassess the extent of disease for all new or worsening reports of pain|
|V. Assess the impact of pain on psychological well being and physical function|
Patients with breast experience predictable patterns of pain that can occur in defined syndromes.8 These are shown in Table 2. Local breast pain may be a diagnostic clue indicating the presence of breast cancer. Other pain syndromes in patients with breast cancer include postmastectomy pain, brachial plexopathy caused by direct tumor infiltration or irradiation, metastatic bone pain, myalgias, and arthralgias associated with chemotherapy. Postmastectomy pain is a well-described phenomenon that obviously is unique to patients with breast cancer.9, 10 It occurs in 5–20% of women and appears to be more common among women who undergo axillary dissection or when postoperative complications occur, such as seroma or hematoma. This pain can be quite disabling and can be distinguished by its quality and distribution from brachial plexopathy pain, which usually carries a more ominous prognosis. Treatment includes the administration of analgesics, including opioids for severe pain, physical therapy to maintain maximum range of motion about the shoulder, and reassurance of the patient that the pain is not caused by disease recurrence.
Table 2. Common Pain Syndromes in Patients with Breast Carcinoma
|I. Musculoskeletal pain (bone pain syndromes)||Metastatic bone pain is the most common pain syndrome associated with direct tumor involvement|
| 1. Vertebral body metastasis||Focal pain in neck or back, risk of spinal cord compression|
| 2. Pelvis and long bone metastasis||Risk of pathologic fracture with weight bearing; early orthopedic consultation usually required|
| 3. 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 associated numbness and weakness; bilateral pain indicates risk for spinal cord compression; can be a complication of radiotherapy to the region|
| 2. Lumbosacral plexopathy||Most common with renal, uterine, and colon carcinoma; pain in back radiating into leg: bilateral pain indicates risk for 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 sarcomas|
| Postsurgical pain syndromes|| |
| 1. Postmastectomy||May occur in up to 20% of women; more common with axillary dissection; injury to intercostal-brachioradial nerve implicated; 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 subjective sensation of numbness; vinca alkaloids, cisplatinum, and toxoids are most common offenders; nerve damage is dose 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 upper GI sources of pain produce periumbilical, crampy pain often referred to back; pain is often associated by small and/or large bowel obstruction with nausea and emesis|
| ||Perineal and perirectal pain produced by infiltration of tumor or radiation-induced fibrosis of presacral spaces involving the sacral plexus; sitting exacerbates perineal pain in most patients|
Aggressive pain management is important for patients with malignant disease, because pain compromises the ability to undergo cancer treatment and medical procedures. Recent studies suggest that unrelieved pain can adversely influence survival,11–13 and effective treatment is defined as treatment that improves the ability to function. Pain is treated in patients with cancer by eliminating the cause of pain whenever possible: supporting the patient's use of self-coping methods of pain control (e.g., massage, distraction, prayer) and the use of pain medications in appropriate doses and the prevention and treatment of side effects with the goals of relieving pain and improving function.
Several studies have documented ethnic and racial disparities in pain treatment. In a series of studies,14–16 Todd et al. observed that Hispanic patients in East Los Angeles and African-American patients in Atlanta who entered emergency rooms within 6 hours of sustaining a long-bone fracture had an approximately two-fold to three-fold greater chance of receiving no pain medication compared with white patients who had similar injuries. This racial disparity persisted even when pain intensity or insurance status of black patients and white patients were equivalent.
Pain treatment for patients with cancer is associated with these same disparities. A 1994 analysis of the Eastern Cooperative Oncology Group's data17 suggested that clinics serving primarily minorities were three times more likely to offer inadequate pain management. That study also identified patient gender (female) as a factor that predicted inadequate pain management. A follow-up study in 199718 found that 65% of a population of African-American and Hispanic patients with a range of malignancies, including breast carcinoma, did not receive guideline-recommended prescriptions for analgesics compared with 50% of nonminority patients. The Office of Minority Health reported19 that almost 62% of patients at institutions serving predominantly African-American patients were prescribed inadequate analgesics. Anderson et al. found that almost one-third (31%) of African-American patients received pain medications of insufficient strength to manage their pain.20 Furthermore, it was found that physicians underestimated the severity of pain for 74% of African-American patients and for women in general. Three major barriers to improving pain management are reported consistently: patient reluctance to report pain for a variety of reasons; inadequacies of the medical team's ability to assess pain; and health system barriers, such as the high cost and relatively unavailability of pain medications, especially for minority patients.20 In general, physician training in pain management and palliative care is insufficient.21 At least one study22 has suggested that, even if pain is assessed correctly and an appropriate medication is prescribed, African Americans may not be able to obtain essential medications, such as morphine. In that study, Morrison et al. demonstrated that only 25% of pharmacies in predominantly nonwhite New York neighborhoods stocked morphine, whereas 72% of pharmacies in affluent white neighborhoods had sufficient stocks of these drugs.
Ethnic-Racial Issues in Pain Management
Race and ethnicity can influence a number of factors that 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 expectations of the patient regarding pain and pain treatment; the nature of the patient's self-report of pain; the degree of psychological distress experienced by the patient; and genetic influences on drug absorption, metabolism, and elimination. Although each of these patient-related factors theoretically may be influenced by racial or genetic variables, the few studies available were focused in the area of genetic influences on drug metabolism.
In a review of the literature,23 Johnson found support for the premise that only pharmacokinetic processes that are mediated biologically or biochemically have the potential to exhibit differences between racial or ethnic groups. Examples of these pharmacokinetic processes include 1) bioavailability for drugs that undergo hepatic first-pass metabolism, 2) protein binding, 3) volume of distribution, 4) hepatic metabolism, and 5) renal tubular secretion. Though the existing literature is sparse, some studies have observed racial differences in analgesic pharmacology. For example, the cytochrome p450 isoenzyme 2D6 is responsible for metabolizing a number of medications, including codeine. Codeine is biotransformed to morphine through the action of the 2D6 isoenzyme. Ten percent of the white population and about 0.5% of the black 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 clinically and statistically significant difference in renal elimination of morphine between Chinese patients and Caucasian patients, whereas Chinese patients cleared morphine and its principle metabolites, 3-glucoronide and 6-glucoronide, more efficiently from their kidneys compared with Caucasian patients. The 6-glucoronide metabolite of morphine is at least twice as potent as morphine itself in producing analgesia. Therefore, these differences in renal elimination may have important clinical consequences. The majority of studies evaluating racial and ethnic effects on pharmacokinetics have focused on comparisons between Asians and Caucasians, with only a limited number of studies comparing African Americans and Caucasians. These few studies have produced mixed results,23 although they indicate clearly that racial-ethnic differences do exist.
Pain-related factors that influence analgesic response include the rate and tempo of the tissue injury causing pain, characteristics of pain (e.g., steady vs. intermittent, movement-related pain, or incident pain), and the pathophysiology of pain (nociceptive vs. neuropathic). Drug-related factors also can influence pain management and analgesic response. The efficacy of the drug can be influenced by the characteristics of the pain and the drug class. For example, inflammatory pains are treated best with aspirin and other nonsteroidal antiinflammatory agents (e.g., ibuprofen). However, these drugs have ceiling affects to their analgesic efficacy and, thus, are most effective in managing pain of mild-to-moderate intensity. Additional drug-related factors include the potency of the drug, the appropriateness of the dose given, and receptor-selective effects. Although gender-related influences of drug response have been documented, to date, no racial or ethnic differences in analgesic responsiveness have been reported.
Gender Issues in Pain Management
Men and women do not differ with regard to pain thresholds, although there are some differences in how men and women react to pain. A specific class of opioid medications seems to have gender specific effects, producing a greater intensity and duration of pain relief in women compared with men. In a blinded, randomized study,26 women and men were given the mixed agonist-antagonist opioid nalbuphine to treat postoperative dental pain. The women had a much more robust analgesic response compared with the men, experiencing greater peak analgesia and longer duration. In fact, almost 2 hours after administration, the men reported that their pain had returned to baseline levels, whereas the women continued to report pain relief. This gender specific effect warrants additional research.
In summary, acute and chronic pain usually is not managed optimally in many minority patient groups, including African-American men and women. In this milieu of undertreatment, minority groups are at a particular risk. Possible explanations for these disparities in pain treatment and analgesic response include physician bias, training deficiencies, behavioral and self-reporting factors among patients, and genetic and biological differences in response, although the latter are likely to be relatively minor contributions to these pain-related disparities. However, additional research is necessary to understand properly the roles of race and ethnicity in pain management as well as its relation to overall quality of life.
Another area in which ethnic and racial influences on quality of life are of concern is that of hospice care utilization. Despite their higher mortality rate from cancer compared with whites and other minority groups,1 African Americans under use hospice and palliative care. Fewer than 10% of the 700,000 patients who receive hospice care in the United States are African American.27 According to the last published data, 93% of patients using the Medicare hospice benefit are white.28 This under utilization appears to be just as prevalent among African-American women with end-stage breast cancer.
Few data have been collected to explain this disparity. Some evidence suggests that the under use of hospice care by African Americans is attributable to the disproportionate gap in education about and knowledge of the hospice programs (i.e., what they are, how they provide assistance, and how they function) both for patients and for the providers who care for African-American patients.29, 30 Many patients simply do not know that hospice care is available or how to gain access to hospice care. Cultural and family beliefs also may limit the use of hospice care.29, 30 Among many African Americans, the family (usually another female) is expected to take care of the patient with terminal illness. To compound the matter, many physicians are not familiar with hospice care, particularly primary care physicians. The lack of education among physicians is evidenced by the fact that hospice care is being given only in the last few days of life—the average hospice stay is less than 2 weeks for most patients despite the fact that Medicare eligibility rules allow for up to 6 months of use.27, 28
African Americans may find hospice care inaccessible for economic reasons. For example, Medicare data show that < 10% of the 38.8 million people who are enrolled in Medicare are African Americans.31 Some have suggested that the mechanisms for enrollment are weighted against minorities. For example, Medicare Part A enrollment is a passive process, occurring automatically upon eligibility for and activation of Social Security benefits. Enrollment in Part B, however, requires that a patient completes enrollment information and, sometimes, incurs additional costs. If patients are not eligible for Social Security benefits and have poor access to primary care (where enrollment for Part B often occurs), then they are at a disadvantage in qualifying for Medicare hospice benefits.
Treatment Procedures and Outcomes
Quality of life for African-American women with breast cancer is affected not only by under use of hospice care but also by their decisions regarding screening and treatment. Cultural and ethnic differences may have an impact on these decisions. For example, African-American women with breast cancer are more likely to have an external health locus of control compared with white women who have breast cancer.6 Lannin and his associates found that a majority of African-American women with late-stage presentation believed that surgery should be avoided because it would allow the cancer to spread.32, 33 Many chose alternative treatments, including herbs, chiropractors, and even prayer, instead of conventional treatments. Many were unwilling to seek treatment for fear that it would change their relationships with the men in their lives due to changes in their appearance or expected financial burdens. Although these African-American women were from predominantly rural regions, these data illustrate the principle that such cultural and ethnic beliefs can have an impact on treatment decisions and, consequently, on the quality of life associated with the outcomes of those decisions. Some early data have suggested that African-American women were less likely than white women to undergo surgical therapies,4, 34 but more recent data suggest that, when disease stage is taken into consideration, this difference disappears.35 However, African-American women are more likely than white women to choose modified radical mastectomies over breast-conserving surgery.35, 36 Other data have shown that African-American women are more likely to receive adjuvant chemotherapy compared with white women.4, 37
Some of these differences may be related to disease stage, to racial differences in preoperative and pretreatment information provided patients by their physicians, and possibly to patients' access to care. Generational, cultural, and socioeconomic factors influence patients' treatment decisions as well. Research is needed to identify the specific factors in women's decisions for treatment and the impact of such decisions on the quality of life of African-American patients with breast cancer.
In addition, differences likely exist among physicians' attitudes and perspectives toward end-of-life care. Studies are needed to determine whether personal physician preferences have an impact on treatment decisions regarding pain management, symptom management, and quality of life.
Quality of Life and Opportunities for Improving Understanding and Care
The existing data demonstrate that physicians, nurses, other health care practitioners, and community lay people must be educated better about quality-of-life issues, including the critical importance of adequate pain and symptom management and the role of hospice care in terminally ill patients. Despite considerable concern for the quality of life for patients with cancer, research in the area has focused on its physical aspects, such as pain management, and on demonstrating the existence of racial or ethnic disparities. However, there are many aspects of quality of life, including psychosocial, social, and spiritual, that are not understood well, especially among African Americans and other minority groups. Future quality-of-life studies should focus on these areas and should pay particular attention to how these are manifested in minorities.
The measurement of quality of life also is of concern. Although a number of tools have been developed to assess quality of life for health concerns (e.g., the SF-36),38 many of these are oriented toward pain and other symptoms and neglect the psychosocial, social, and spiritual aspects that are important to patients with advanced malignant disease. A standardized measure that encompasses each of these areas would benefit the study of quality of life significantly. Finally, the inclusion of quality-of-life measures into routine health surveillance systems, such as the National Health and Nutrition Examination Survey and the Behavioral Risk Factor Surveillance System, would provide a better understanding of quality-of-life issues. In conjunction, efforts must be made to better represent underserved populations in the samples surveyed.