Robin K. Matsuyama

Why Do Patients Choose Chemotherapy Near the End of Life? A Review of the Perspective of Those Facing Death From Cancer

PURPOSE The number of patients receiving chemotherapy near the end of life is increasing, as are concerns about goals of treatment, toxicity, and costs. We sought to determine the available sources of knowledge, the choices, and concerns of actual patients, and how patients balanced competing issues. METHODS We used a literature search from 1980 to present. RESULTS Available patient sources provide little information about prognosis, choices, alternatives, consequences, or how to choose. Many patients would choose chemotherapy for a small benefit in health outcomes, and for a smaller benefit than perceived by their health care providers for their own treatment. Adverse effects are less a concern for patients than for their well health care providers. There are no decision aids to assist patients with metastatic disease in making their choices, such as there are for adjuvant breast therapy. CONCLUSION The perspective of the patient is different from that of a well person. Patients are willing to undergo treatments that have small benefits with major toxicity. Receiving realistic information about the different options of care and the likelihood of successful treatment or adverse effects is difficult. These factors may explain some of the increased use of chemotherapy near the end of life. Decision aids and honest, unbiased sources to inform patients of their prognosis, choices, consequences, typical outcomes, and ways to make decisions are needed. More prospective information about how patients make their choices, and what they would consider a good choice, would assist informed decision making.

Paradoxes in Advance Care Planning: The Complex Relationship of Oncology Patients, Their Physicians, and Advance Medical Directives

PURPOSE Many seriously ill patients with cancer do not discuss prognosis or advance directives (ADs), which may lead to inappropriate and/or unwanted aggressive care at the end of life. Ten years ago, patients with cancer said they would not like to discuss ADs with their oncologist but would be willing to discuss them with an admitting physician. We assessed whether this point of view still held. PATIENTS AND METHODS Semi-structured interviews were conducted with 75 consecutively admitted patients with cancer in the cancer inpatient service. RESULTS Of those enrolled, 41% (31 of 75) had an AD. Nearly all (87%, 65 of 75) thought it acceptable to discuss ADs with the admitting physician with whom they had no prior relationship, and 95% (62 of 65) thought that discussing AD issues was very or somewhat important. Only 7% (5 of 75) had discussed ADs with their oncologist, and only 23% (16 of 70) would like to discuss ADs with their oncologist. When specifically asked which physician they would choose, 48% (36 of 75) of patients would prefer their oncologist, and 35% (26 of 75) would prefer their primary care physician. CONCLUSION Fewer than half of seriously ill patients with cancer admitted to an oncology service have an AD. Only 23% (16 of 70) would like to discuss their ADs with their oncologist but nearly all supported a policy of discussing ADs with their admitting physician. However, fully 48% (36 of 75) actually preferred to discuss advance directives with their oncologist if AD discussion was necessary. We must educate patients on why communicating their ADs is beneficial and train primary care physicians, house staff, hospitalists, and oncologists to initiate these difficult discussions.

Education level, not health literacy, associated with information needs for patients with cancer.

OBJECTIVE Cancer patients receiving adjuvant therapy encounter increasingly complex situations and decisions with each new procedure and therapy. To make informed decisions about care, they need to be able to access, process, and understand information. Individuals with limited health literacy may not be able to obtain or understand important information about their cancer and treatment. The rate of low health literacy has been shown to be higher among African Americans than among non-Hispanic Whites. This study examined the associations between race, health literacy, and self-reported needs for information about disease, diagnostic tests, treatments, physical care, and psychosocial resources. METHODS Measures assessing information needs were administered to 138 newly diagnosed cancer patients. Demographics were assessed by survey and health literacy was assessed with two commonly used measures: the Rapid Estimate Adult Literacy in Medicine (REALM) and the Short Test of Health Literacy in Adults (STOFHLA). RESULTS Study findings indicate that educational attainment, rather than health literacy, is a significant predictor of information needs. CONCLUSION Overcoming barriers to information needs may be less dependent on literacy considerations and more dependent on issues that divide across levels of educational attainment. PRACTICE IMPLICATIONS Oncologists and hospital staff should be attentive to the fact that many patients require additional assistance to meet their information needs.

Improving Access to Online Health Information With Conversational Agents: A Randomized Controlled Experiment

Background Conventional Web-based search engines may be unusable by individuals with low health literacy for finding health-related information, thus precluding their use by this population. Objective We describe a conversational search engine interface designed to allow individuals with low health and computer literacy identify and learn about clinical trials on the Internet. Methods A randomized trial involving 89 participants compared the conversational search engine interface (n=43) to the existing conventional keyword- and facet-based search engine interface (n=46) for the National Cancer Institute Clinical Trials database. Each participant performed 2 tasks: finding a clinical trial for themselves and finding a trial that met prespecified criteria. Results Results indicated that all participants were more satisfied with the conversational interface based on 7-point self-reported satisfaction ratings (task 1: mean 4.9, SD 1.8 vs mean 3.2, SD 1.8, P<.001; task 2: mean 4.8, SD 1.9 vs mean 3.2, SD 1.7, P<.001) compared to the conventional Web form-based interface. All participants also rated the trials they found as better meeting their search criteria, based on 7-point self-reported scales (task 1: mean 3.7, SD 1.6 vs mean 2.7, SD 1.8, P=.01; task 2: mean 4.8, SD 1.7 vs mean 3.4, SD 1.9, P<.01). Participants with low health literacy failed to find any trials that satisfied the prespecified criteria for task 2 using the conventional search engine interface, whereas 36% (5/14) were successful at this task using the conversational interface (P=.05). Conclusions Conversational agents can be used to improve accessibility to Web-based searches in general and clinical trials in particular, and can help decrease recruitment bias against disadvantaged populations.

Measurement of Cancer Health Literacy and Identification of Patients with Limited Cancer Health Literacy

Health literacy is related to a broad range of health outcomes. This study was designed to develop a psychometrically sound instrument designed to measure cancer health literacy along a continuum (CHLT-30), to develop another instrument designed to determine whether a patient has limited cancer health literacy (CHLT-6), and to estimate the prevalence of limited cancer health literacy. The Cancer Health Literacy Study involving 1,306 Black and White cancer patients was conducted between April 2011 and April 2013 in the Virginia Commonwealth University Massey Cancer Center and surrounding oncology clinics. A continuous latent variable modeling framework was adopted to dimensionally represent cancer health literacy, whereas discrete latent variable modeling was used to estimate the prevalence rates of limited cancer health literacy. Self confidence about engaging in health decisions was used as the primary outcome in external validation of new instruments. Results from a comprehensive analysis strongly supported the construct validity and reliability of the CHLT-30 and CHLT-6. For both instruments, measurement invariance tests ruled out item/test bias to explain gender and race/ethnicity differences in test scores. The limited cancer health literacy rate was 18%, a subpopulation consisting of overrepresented Black, undereducated, and low-income cancer patients. Overall, the results supported the conclusion that the CHLT-30 accurately measures cancer health literacy along a continuum and that the CHLT-6 efficiently identifies patients with limited cancer health literacy with high accuracy.

On the Validity of the Rapid Estimate of Adult Literacy in Medicine (REALM) Scale as a Measure of Health Literacy.

Originally developed to measure the literacy level of patients, the Rapid Estimate of Adult Literacy in Medicine (REALM) scale is one of the most widely used instruments to measure the construct of health literacy. This article critically examines the validity of the REALM as a measure of health literacy. Logical analysis of content coverage led to the conclusion that scores on the REALM should not be used to make inferences about a persons level of health literacy. Rather, the REALM should be used to make inferences about the ability of a person to read and pronounce health related terms. Evidence from an analysis of a sample of 1,037 respondents to the REALM with a cancer diagnosis supports the quality of the REALM as a measure of reading and pronunciation ability. Other uses of the REALM in health literacy research are discussed.

Will patients want hospice or palliative care if they do not know what it is

Approximately half the patients receiving hospice and palliative care services are those with cancer diagnoses. Both hospice and palliative care are underutilized by African Americans. Awareness of service availability is a prerequisite to accessing services. This study assessed awareness of hospice and palliative care among African American and non-Hispanic white patients at a cancer center. A cross-sectional survey was conducted at an urban, university-affiliated oncology clinic (N = 133). Participants were non-Hispanic white (58%) and African American (42%). Descriptive analyses were conducted to examine demographics and hospice and palliative care awareness. &khgr;2 Tests were used for bivariate comparisons. Knowledge of hospice care was lower among African Americans than whites and among those with limited education. Knowledge of palliative care followed the same pattern, but even fewer people were aware of or could define those services. This lack of awareness may explain the disproportionately low use of hospice and palliative care by African Americans. Improved awareness of hospice and palliative care is a first step toward reducing disparities in utilization of important and useful services for persons with life-limiting illnesses. Lack of awareness may limit access by cancer patients to needed hospice and palliative care.

Cancer Patients’ Understanding of Prognostic Information

Prognostic information is necessary for cancer patients to be fully informed about the likely course of their disease. This information is needed for practical planning and treatment decisions. This study sought to examine how cancer patients understand the prognosis information available to them. The setting is an urban safety net hospital. Six focus groups with cancer patients (N = 39) were digitally recorded and transcribed verbatim then analyzed using phases of content analysis. Participants in all groups discussed the prognosis almost exclusively in terms of mortality and reported that their physicians and nurses mostly provided prognostic information in terms of months or years for survival. This finding held across all cancer types and stages. Patients tend to think of prognosis information as being only estimated limited survival and find the idea upsetting. Due to this view on prognosis, patients need further explanation regarding where the prognosis information comes from and what prognostic information can tell them in order to make use of it.

Genuine Encounters: Responses to Death

“In genuine encounter, both persons are changed, however minutely.” —R. May Five years ago, I sat by my husband in the infusion area while he received chemotherapy for advanced gastric cancer. His oncologist always skillfully and sensitively blended truth with hope, so while we may not have completely understood what death meant, we did know that he was dying. That knowledge helped us accept death as it approached. Even while our primary focus was on my husband and his illness, we wondered about the professional caregivers. We knew very little about them; did they know us? How did they endure participating in personal tragedies such as ours, even if those tragedies were punctuated with successes? In every encounter we found compassion, patience, kindness, and care. What did they really think about their patients? How did they feel when one of their patients became sicker or died? Immediately after my husband died at home, his oncologist spoke to me on the telephone. I thought that was brave of him. I’m not sure I would have wanted to speak to me without knowing what to expect. In fact, my husband’s death had been very peaceful, and even beautiful, and I was feeling transcendent, as though we had accomplished something remarkable after a strenuous journey. I recall very little of the conversation except that the physician sounded sad. It felt genuine and I wanted it to be genuine. When I received condolence letters from each of the professional caregivers, I was touched. I still have them today. My husband had been a remarkable individual and it was important for me to believe that people cared that he had died. Five years later, I worked as a psychosocial researcher at the same cancer institute where my husband was treated. The intensity of our shared experience had enriched our marriage while he was alive, and ultimately transformed my life. I went from market researcher to receiving a PhD in psychology, with the topic of my dissertation being “Physicians’ experiences with patients’ deaths: Meaning and connection.” This study consisted of in-depth interviews with physicians talking at length about their responses to patients’ deaths. As I prepared to read the interviews of 140 physicians, I wasn’t sure what to expect. What I found was that most physicians told stories that were beautiful, articulate, and philosophical. Physicians described interactions with patients, families, and other health care providers. They spoke of conflict and comfort, caring and grieving, spiritual beliefs and personal feelings, and transitions from life to death. Each physician brought a separate and authentic voice to the experience of death. On the most basic level, the physicians showed that they cared about their patients. They also were moved and sometimes even changed by their experiences. One attending physician described her feelings by saying, “So there’s always some sadness, regardless even if it’s one where you know the outcome could not have been any different. It’s just that connection—that human connection.” A resident quietly sat with a patient as she died and talked about witnessing the family’s love and caring, and the patient’s last breath. Then he said, “But I remember From the Massey Cancer Center, Virginia Commonwealth University, Richmond, VA.

The relationship between treatment settings and diagnostic attributions of depression among African Americans

OBJECTIVE To explore the relationship between treatment setting characteristics and diagnostic attributions of depression among community-dwelling African Americans. METHODS Data come from the National Survey of American Life, a nationally representative sample of African Americans and Caribbean Blacks. Major Depression (MD) was assessed using the Composite International Diagnostic Inventory. Participants were categorized into four diagnostic groups: never MD, MD never attributed to physical health problems (i.e., affective depression), MD sometimes attributed to physical health problems (i.e., complicated depression), and MD always attributed to physical health problems (i.e., physical depression). Multinomial regression was used for assessment. RESULTS Among 441 participants, 66.4% were classified as affective depression, 17.8% as complicated depression and 15.8% as physical depression. Seeking treatment from a mental health professional was associated with increased likelihood of being in the complicated depression group [adjusted odds ratio (AOR): 5.52; 95% confidence interval (CI): 2.28-13.36]. Seeking treatment from a family doctor was associated with physical depression (AOR: 2.93; 95% CI: 1.18-7.26). Seeking care from three or more different health care providers was associated with complicated depression (AOR: 1.99; 95% CI: 1.17-3.40). CONCLUSION Results suggest that encounters with health care providers influence the diagnostic attribution of depression in a systematic manner.