Influences of patient sociodemographics on cancer information received through the first 9 months of treatment.

This study evaluates the amount and change of information cancer patients report receiving related to disease, diagnostic tests, treatments, physical care, and psychosocial resources over 9 months of treatment. Information received by newly diagnosed, stages II-IV cancer patients receiving treatment (N = 139) at baseline, 4, and 9 months is examined through a two-stage latent growth model. Each information-received category was modeled with latent variables of intercept and slope. Random intercept and slope factors are then regressed on multiple sociodemographic covariates. The mean amount of information received does not change over time, but significant inter-individual variability was observed. Age (younger) and marital status (married) are significantly associated with a higher total amount of information received while education (less) and race (African-American) are significantly associated with slower declines of information received over time. While the mean amount of information cancer patients receive is relatively constant over the course of treatment for the first 9 months, the level and rate of information received is somewhat varied based on patient characteristics. Healthcare professionals need to be aware of the varying amounts of information received by patients and ensure that the amount is consistent with the patient's individual needs.

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.

The value of an educational video before consultation with a radiation oncologist.

This study aims to assess the efficacy of a radiation therapy (RT) education video for patients referred for treatment. The investigators produced a 23-min guide to radiation therapy DVD, combining didactic material and patient narratives. Patients (n=32) had not yet received their initial consultation. Baseline awareness about cancer and treatment was assessed by surveys including the rapid estimate of adult literacy in medicine. Knowledge about RT was assessed before and after viewing the video with a separate 21 question survey. Differences in benefit for sociodemographic subgroups including age, gender, ethnicity, income, education, and health literacy level were explored. Baseline assessments identified 78 % of patients regardless of sociodemographic status had "little" to "no" basic knowledge of RT. The mean number of correct responses in the 21 question survey assessing how RT works improved from 9.8 to 11.1 after watching the video (p<0.0001; 95 % CI: 1.3-3.0), a statistically significant benefit that was present among all sociodemographic subgroups, but more prominent among those with a greater than high school education (p=0.002). Patient satisfaction with the video was high. Knowledge among cancer patients regarding RT is poor, regardless of sociodemographic factors. This pilot study demonstrates the utility of a brief video to universally improve patient awareness about RT. While patients may ultimately learn about RT during their course of treatment, we advocate for any tools that can improve patient knowledge at the time of initial consultation as this is typically the time they are asked to acknowledge informed consent for treatment.

Validation of the Cancer Health Literacy Test-30 for Populations Without Cancer.

BACKGROUND: Cancer incidence continues to be common and highly consequential for future cancer patients, family members, and other untrained caregivers. Because low health literacy increases the likelihood of poor health outcomes, those with low health literacy would benefit from interventions to improve cancer health literacy. OBJECTIVE: Our study was designed to address the need for measuring cancer health literacy in populations without cancer. METHODS: The Cancer Health Literacy Test-30 (CHLT-30) was psychometrically tested on 512 people without a cancer diagnosis. KEY RESULTS: In this population without cancer, the CHLT-30 had strong psychometric properties including unidimensional measurement structure, high reliability, and invariant measurement between gender, race/ethnicity, and educational-attainment groups. CONCLUSION: These results support the use of the CHLT-30 to measure cancer health literacy in research studies of family members of people with cancer or the general public. The potential for using the CHLT-30 in clinical practice to assess the need for education for general patient and cancer patient populations is a future direction. [HLRP: Health Literacy Research and Practice. 2018;2(2):e58-e66.]. PLAIN LANGUAGE SUMMARY: Psychometric evidence suggests that the CHLT-30, originally developed for cancer patients, can be used to measure cancer health literacy of individuals with no history of cancer as well.

Diagnosing and discussing imminent death in the hospital: a secondary analysis of physician interviews.

BACKGROUND: Many reports suggest clinicians are often inadequately prepared to "diagnose dying'' or discuss the likelihood of imminent death with patients and families. OBJECTIVE: To describe whether and when physicians report recognizing and communicating the imminence of death and identify potential barriers and facilitators to recognition and communication about dying in the hospital. METHODS: Secondary exploratory analysis of interviews with 196 physicians on the medical teams caring for 70 patients who died in the hospital. RESULTS: Although 38% of physicians were unsure on admission the patient would die during this hospitalization, over the course of hospitalization 86% reported knowing death was imminent. Most reported feeling certain days (57%) or hours (18%) before the patient died. Fewer than half of patients, however, were told of the possibility they might die. Communication was most likely to occur for patients who had at least one member of the medical team who was certain that death was imminent, patients who were lucid during their last days, and younger patients. Only 11% of physicians reported personally speaking with patients about the possibility of dying. Physicians who recognized imminent death early and who spoke with patients about the possibility of dying were more likely to report higher satisfaction with end-of-life care provided to patients. CONCLUSIONS: Because more than two thirds of patients were unconscious or in and out of lucidity in the last few days of life, waiting for certainty about prognosis may leave little opportunity to help patients and their families prepare for death. Our results identify opportunities for improvement in communication in the face of uncertainty about the imminence of death. In addition to potential benefits to patients and families, these findings suggest that enhancing communication practices may also benefit physicians through increased satisfaction with care and closer connection with those for whom they provide care.

Cultural perceptions in cancer care among African-American and Caucasian patients.

PURPOSE: This exploratory study examined perceptions and beliefs of African Americans and Caucasians related to cancer care. Understanding belief systems and cultures optimizes cancer treatment and care delivery to ethnic minority individuals. PATIENTS AND METHODS: Focus groups were conducted with 39 African-American and Caucasian cancer patients. Data analysis included whole group analysis with a team of five researchers. RESULTS: Regardless of ethnicity, cancer patients share many of the same emotions and experiences, and want complete information and quality care. Differences were also apparent. African-American participants were more likely to report increased religious behaviors, believe that healthcare providers demonstrate care with simple actions and provision of practical assistance, and use church and community information sources. Caucasian participants were more likely to report spiritual but not overtly religious changes, and depend on healthcare providers for information. CONCLUSION: Understanding how culture colors perceptions, communication and information requirements is critical to providing effective care to ethnically diverse cancer patients. Findings have implications for professionals understanding ways patients seek information, the role of spirituality and religion in care, and ways healthcare providers demonstrate care.

Beyond the IRB: examining common but rarely explored ethical issues in psychosocial research.

This article discusses common ethical and practical considerations in psychosocial and behavioral research in healthcare. Issues such as appropriate objectives and intent, risk-benefit ratios, research design, and human subject protection are explored. The burden of ethical research design and implementation is placed on the investigator, rather than relying solely on institutional review boards to judge individual projects. The benefit of acquisition of knowledge must be balanced against the burdens of the research on society in general and human subjects specifically. Scientific replication of research is encouraged, unnecessary duplication defined and discouraged, and benefits of true collaboration outlined. Investigators are advised to consider the context, intent, purpose, implementation, and use of information when developing research. The concept of "researcher myopia" is defined as a common stumbling block. It is suggested that academic researchers also look to other disciplines, such as industry, for examples of research that is concise, cost-effective, and reliable.

Health Literacy Is an Independent Predictor of Cancer Patients' Hospitalizations.

BACKGROUND: Lower levels of health literacy predict higher hospitalization rates. Hospitalization is expensive and many admissions are potentially avoidable. Research examining the relationship between health literacy and health outcomes for cancer patients is limited, and no published studies to date have focused on hospitalization and health literacy in cancer patients. OBJECTIVE: This study examined the ability of health literacy to predict hospitalization of cancer patients. METHODS: This secondary data analysis investigated the relationship between health literacy and hospitalization rates of adult cancer patients in the first 5 years after their diagnosis. The sample included a diverse selection of cancer diagnoses and all stages of cancer were represented. Health literacy was assessed using the Cancer Health Literacy Test 30 (CHLT-30), a psychometrically sound measure of health literacy validated in a cancer patient population. Health literacy's ability to predict the number of times hospitalized, total days spent hospitalized, and number of 30-day readmissions was examined using multivariate negative binomial multiple regression to control for the outcomes and potentially confounding variables. KEY RESULTS: When controlling for potentially confounding variables, a negative relationship was found between health literacy and the number of inpatient hospitalizations (ß = -0.041, p = .009) and the total number of days spent hospitalized (ß = -0.028, p = .023) independently, whereas the relationship between health literacy and the number of 30-day readmissions failed to reach significance (ß = -0.002, p = .903). CONCLUSIONS: Patients with lower health literacy need additional assistance to avoid unplanned hospitalizations. [Health Literacy Research and Practice. 2017;1(4):e153-e162.]. PLAIN LANGUAGE SUMMARY: Results from this study found that as cancer patients' health literacy scores decreased, the number of times hospitalized and the total number of days spent in the hospital increased. This relationship was significant when controlling for diagnosis, stage at diagnosis, receipt of chemotherapy, number of comorbidities, death, education, and race. Cancer patients with low health literacy are at a higher risk of being hospitalized.

Healthcare utilization among Hispanic immigrants with diabetes: investigating the effect of US documentation status.

Previous studies have not examined whether documentation status has an effect on healthcare utilization among US Hispanic immigrants with diabetes. A secondary analysis was conducted using data from the Pew Hispanic Center and Robert Johnson Wood Foundation's 2007 Hispanic Healthcare Survey. Hispanic immigrants diagnosed with diabetes were included in analyses. The association between documentation status and healthcare utilization was assessed using logistic regressions. Of N = 577 Hispanic immigrants with diabetes, 80 % were documented immigrants and 81% reported having visited a healthcare provider in the last 6 months. Adjusting for confounders, those who were undocumented faced higher odds of having seen a healthcare provider more than 6 months ago or never when compared to those who were documented (OR = 1.79; 95% CI 1.01, 3.14). Unique opportunities in addressing healthcare disparities can be found in focusing on the Hispanic immigrant population living with diabetes.

Cancer patients' information needs the first nine months after diagnosis.

OBJECTIVE: Cancer patients' information needs about disease, diagnostic tests, treatments, physical care, and psychosocial resources during treatment are examined. METHODS: Information needs of newly diagnosed, Stages II-IV cancer patients receiving treatment (N=138) were studied over nine months. Information needs were assessed using The Toronto Informational Needs Questionnaire (TINQ). There are five subscales for the TINQ: disease, diagnostic tests, treatment, physical and psychosocial. Health literacy and amount of information wanted were also measured. A repeated measures, univariate two-level model for longitudinal data was analyzed. Separate models for each subscale were constructed and covariates were examined simultaneously for associations with information needs. Models were estimated using FIML. RESULTS: Although significant reduction of needs was observed over time, total information needs remained high throughout. Gender (women), age (younger), race (African American), education (lesser), and marital status (married) were significantly associated with higher information needs over time. Cancer type and stage were not significantly associated. CONCLUSION: Cancer patients' information needs decrease yet remain high over time. Patients' information needs are highest near diagnosis and change throughout the course of their treatment. PRACTICE IMPLICATIONS: As patients obtain and understand information, they will continue to need information in new areas relevant to their care.

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 person's 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.

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.

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.

Patients' reflections on communication in the second-opinion hematology-oncology consultation.

OBJECTIVE: The nature of communication between patients and their second-opinion hematology consultants may be very different in these one-time consultations than for those that are within long-term relationships. This study explored patients' perceptions of their second-opinion hematology-oncology consultation to investigate physician-patient communication in malignant disease at a critical juncture in cancer patients' care and decision-making. METHODS: In-depth telephone interviews with a subset of 20 patients from a larger study, following their subspecialty hematology consultations. RESULTS: Most patients wanted to contribute to the consultation agenda, but were unable to do so. Patients sought expert and honest advice delivered with empathy, though most did not expect the consultant to directly address their emotions. They wanted the physician to apply his/her knowledge to the specifics of their individual cases, and were disappointed and distrustful when physicians cited only general prognostic statistics. In contrast, physicians' consideration of the unique elements of patients' cases, and demonstrations of empathy and respect made patients' feel positively about the encounter, regardless of the prognosis. CONCLUSIONS: Patients provided concrete recommendations for physician and patient behaviors to enhance the consultation. PRACTICE IMPLICATIONS: Consideration of these recommendations may result in more effective communication and increased patient satisfaction with medical visits.

Strategies for avoiding burnout in hospice and palliative medicine: peer advice for physicians on achieving longevity and fulfillment.

BACKGROUND: Hospice and palliative medicine (HPM) is now an American Board of Medical Specialties-recognized subspecialty, and many physicians are choosing it as a career. There is little written about recognition and prevention of burnout or physician self-care in this challenging and ever-evolving field. METHODS: We conducted a qualitative online survey of 40 HPM physicians practicing in the United States and asked them to comment on their strategies for avoiding burnout and finding fulfillment in palliative medicine. Responses were coded into thematic classes by commonalities. RESULTS: Thirty of 40 HPM physicians (19 males, 11 females) surveyed responded in full. Each listed between 1 to 7 strategies (median 4 per respondent) they felt to be important in preventing burnout that were placed in 1 of 13 thematic classes. Physical well-being was the most common strategy reported (60%), followed by professional relationships (57%), taking a transcendental perspective (43%), talking with others (43%), hobbies (40%), clinical variety (37%), personal relationships (37%), and personal boundaries (37%). "Time away" from work (27%), passion for one's work (20%), realistic expectations and use of humor and laughter (13% each), and remembering patients (10%) were cited less frequently. CONCLUSIONS: HPM physicians report using a variety of strategies to promote their personal well-being suggesting a diversified portfolio of wellness strategies is needed to deal with the challenges of palliative care medicine. Additional studies are needed to help HPM recognize burnout in their practices and among their colleagues, and to determine how to help future HPM physicians develop individualized strategies to promote personal wellness and resilience.

Identifying supportive and unsupportive responses of others: perspectives of African American and Caucasian cancer patients.

This study uses focus group methodology to examine supportive and unsupportive responses experienced by African American and Caucasian cancer patients. Supportive responses included practical assistance, as well as people's willingness to listen, maintain a positive attitude, and pray. Unsupportive responses included others' withdrawal behaviors, patients having to support friends/family as they coped, and family/friends limiting patients' independence. Results reflect ways in which mental health providers, social workers, and health care providers can help patients express support needs, as well as how social networks can be better educated about the types of support valued by patients.