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.

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.

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.

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.

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.

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.

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.

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.

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.

A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer.

Most cancer patients do not have an explicit discussion about prognosis and treatment despite documented adverse outcomes. Few decision aids have been developed to assist the difficult discussions of palliative management. We developed decision aids for people with advanced in curable breast, colorectal, lung, and hormone-refractory prostate cancers facing first-, second-, third-, and fourth-line chemotherapy. We recruited patients from our urban oncology clinic after gaining the permission of their treating oncologist. We measured knowledge of curability and treatment benefit before and after the intervention. Twenty-six of 27 (96%) patients completed the aids, with ameanage of 63, 56% female, 56% married, 56% African American, and 67% with a high school education or more. Most patients (14/27, 52%) thought a person with their advanced cancer could be cured, which was reduced (to 8/26, 31%, P = 0.15) after the decision aid. Nearly all overestimated the effect of palliative chemotherapy. No distress was noted, and hope did not change. The majority (20/27, 74%) found the information helpful to them, and almost all (25/27, 93%) wanted to share the information with their family and physicians. It is possible to give incurable patients their prognosis, treatment options, and options for improving end-of-life care without causing distress or lack of hope. Almost all find the information helpful and want to share it with doctors and family. Research is needed to test the findings in a larger sample and measure the outcomes of truthful information on quality of life, quality of care, and costs.

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.

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.

Giving honest information to patients with advanced cancer maintains hope.

BACKGROUND: Oncologists often do not give honest prognostic and treatment-effect information to patients with advanced disease. One of the primary reasons stated for witholding this information is to "not take away hope." We could find no study that tested if hope was influenced by honest clinical information. METHODS: We tested decision-aids in 27 patients with advanced cancer who were facing first-, second-, third-, and fourth-line chemotherapy. These aids had printed estimates of treatment effect and the patient's chance of survival and being cured (always zero). We measured hope using the Herth Hope Index, which ranks patients' responses to 12 questions and yields a maximum score of 48. RESULTS: The scores on the Herth Hope Index did not change and the patients remained uniformly hopeful about their future. The pretest score was 44.2 (SD 3.9), and it increased to 44.8 (SD 3.86; P = .55 by paired Student's t-test). CONCLUSION: Hope is maintained when patients with advanced cancer are given truthful prognostic and treatment information, even when the news is bad.

Preparation, confidence, and attitudes about chronic noncancer pain in graduate medical education.

BACKGROUND: Physicians report they feel ill-prepared to manage chronic noncancer pain (CNCP), in part because of inadequate training. Published studies and clinical observation demonstrate that trainees lack confidence and reflect negative attitudes about CNCP. Overall, there is minimal published guidance on specific specialty roles and responsibilities in CNCP management. OBJECTIVE: The purpose of this study was to assess resident preparation, confidence, and attitudes about CNCP across graduate medical education programs and to assess resident perception of roles and responsibilities in CNCP management. METHODS: In 2006 we surveyed residents from 13 graduate medical education programs in 3 institutions about CNCP and report quantitative and qualitative analyses of survey responses from 246 respondents. RESULTS: A total of 59% of respondents rated their medical school preparation and 36% rated their residency preparation as "fair" or "poor"; only 17% reported being "confident" or "very confident" in assessing patients with CNCP; and 30% used negative or derogatory terms (eg, manipulative, irritable, needy) to describe patients with CNCP. Respondents from postgraduate years 3-6 were more than twice as likely as postgraduate year 1 or postgraduate year 2 respondents (44% versus 21% and 20%, respectively) to use negative or derogatory terms (P  =  .0007). Respondents were significantly more likely to report that pain specialists are "good" or "excellent" in managing CNCP compared with generalists (73% versus 6%; P < .0001). CONCLUSION: Education in pain management should begin in medical school and continue through graduate medical education, regardless of specialty. Early and sustained training interventions are needed to foster empathy in caring for patients with pain. Residency and fellowhip training should impart a clear understanding of each specialty's role and responsibilities in pain management to better foster patient-centered pain care.

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.

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.

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.

A qualitative study of oncologists' approaches to end-of-life care.

PURPOSE: To understand how oncologists provide care at the end of life, the emotions they experience in the provision of this care, and how caring for dying patients may impact job satisfaction and burnout. PARTICIPANTS AND METHODS: A face-to-face survey and in-depth semistructured interview of 18 academic oncologists who were asked to describe the most recent inpatient death on the medical oncology service. Physicians were asked to describe the details of the patient death, their involvement with the care of the patient, the types and sequence of their emotional reactions, and their methods of coping. Grounded theory qualitative methods were utilized in the analysis of the transcripts. RESULTS: Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end-of-life (EOL) care, and an ability to positively influence patient and family coping with and acceptance of the dying process. These physicians described communication as a process, made recommendations to the patient using an individualized approach, and viewed the provision of effective EOL care as very satisfying. In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support. In their descriptions of communication encounters with patients and families, these physicians did not seem to feel they could impact patients' coping with and acceptance of death and made few recommendations about EOL treatment options. CONCLUSION: Physicians' who viewed EOL care as an important role described communicating with dying patients as a process and reported increased job satisfaction. Further research is necessary to determine if educational interventions to improve physician EOL communication skills could improve physician job satisfaction and decrease burnout.

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.