Caregiver coping mediates the relationship between caregivers' understanding of dementia as terminal and their distress.

We assessed which coping strategies (problem-focused, emotion-focused, dysfunctional) mediate the association between caregivers' understanding of dementia as terminal and their distress. A total of 215 caregivers of community-dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: ß [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem-focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem-focused coping (associated with higher distress) mediated the positive association between caregivers' understanding that dementia is terminal and their distress, emotion-focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion-focused coping strategies. Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem-focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion-focused coping did not offset this relationship.

Prognostic Understanding, Goals of Care, and Quality of Life in Hospitalized Patients with Leukemia or Multiple Myeloma.

Background: Prior studies reveal a lack of illness understanding and prognostic awareness among patients with hematological malignancies. We evaluated prognostic awareness and illness understanding among patients with acute leukemia and multiple myeloma (MM) and measured patient-hematologist discordance. Methods: We prospectively enrolled patients with acute leukemia and MM at Mount Sinai Hospital or Yale New Haven Hospital between August 2015 and February 2020. Patients were administered a survey assessing prognostic awareness, goals of care (GOC), and quality of life. Hematologists completed a similar survey for each patient. We assessed discordance across the cohort of patients and hematologists using the likelihood-ratio chi-square test and within patient-hematologist pairs using the kappa (κ) statistic. Results: We enrolled 185 patients (137 with leukemia and 48 with MM) and 29 hematologists. Among patients, 137 (74%) self-identified as White, 27 (15%) as Black, and 21 (11%) as Hispanic. Across the entire cohort, patients were significantly more optimistic about treatment goals compared with hematologists (p = 0.027). Within patient-hematologist pairs, hematologists were significantly more optimistic than patients with respect to line of treatment (κ = 0.03). For both leukemia and MM cohorts, patients were significantly more likely to respond "don't know" or deferring to a faith-based response with 88 (64%) and 34 (71%), respectively, compared with only 28 (20%) and 11 (23%) of hematologists, respectively. Conclusions: We observed significant discordance regarding prognosis and GOC among patients with hematological malignancies and their hematologists. These data support future interventions to improve prognostic understanding among this patient population to facilitate informed treatment choices.

Prognostic understanding among advanced heart failure patients and their caregivers: A longitudinal dyadic study.

OBJECTIVES: To examine heart failure patients' and caregivers' prognostic understanding (PU) over time, and patient and caregiver factors associated with their own and each other's PU. METHODS: We used longitudinal dyadic data from Singapore, involving surveys with 95 heart failure patient-caregiver dyads every 4 months for up to 4 years. We assessed the association of PU with patient health status, caregiver psychological distress and caregiving hours using random effects multinomial logistic models, controlling for patient and caregiver characteristics. RESULTS: At baseline, half of patients and caregivers reported correct PU. Patient and caregiver variables were associated with their own and each other's PU. Patients with poorer functional well-being were less likely to report correct PU [Average Marginal Effects (95 % CI) 0.008 (0.002, 0.015)] versus incorrect PU. Greater caregiver psychological distress was associated with a lower likelihood of caregivers reporting a correct PU [- 0.008 (-0.014, -0.002)]. Higher caregiving hours reduced the likelihood of patients reporting correct [- 0.002 (-0.003, -0.001)] and increased the likelihood of patients reporting uncertain [0.001 (0, 0.002)] PU. CONCLUSIONS: We found PU among patients and caregivers was influenced by their own and each other's experience. Our findings highlight the importance of ongoing communication to enhance PU of patients and caregivers.

Serious Illness Communication in Cirrhosis Care: Tools to Improve Illness Understanding, Prognostic Understanding, and Care Planning.

Patients with cirrhosis frequently experience an unpredictable illness trajectory, with frequent hospitalizations and complications. Along with the uncertain nature of the disease, the possibility of a lifesaving and curative transplant often makes prognostic discussions and future care decisions challenging. Serious illness communication (SIC) refers to supportive communication whereby clinicians assess patients' illness understanding, share prognostic information according to patients' preferences, explore patients' goals, and make recommendations for care that align with these goals. SIC includes 3 key components: (1) illness understanding; (2) prognostic understanding; and (3) care planning. In this piece, we explore current barriers to early implementation of SIC in cirrhosis care and share possible solutions, including adopting a multidisciplinary approach, delivering culturally competent care, and training clinicians in SIC core skills. By use of a case example, we aim to demonstrate SIC in action and to provide clinicians with tools and skills that can be used in practice.

Patient and Clinician Stakeholder Perspectives on a Patient Portal Questionnaire Eliciting Illness and Treatment Understanding and Core Health-Related Values.

Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20-30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.

Giving information strategically and transparently: A pilot trial of the Oncolo-GIST intervention to promote patients' prognostic understanding.

PURPOSE: Most patients with cancer lack the prognostic understanding necessary to make informed decisions. We tested the feasibility and acceptability of the Oncolo-GIST ("Giving Information Strategically and Transparently, GIST") intervention and explored its associations with patients' improved prognostic understanding. METHODS: The Oncolo-GIST intervention distills prognostic discussions into easy-to-understand talking points. Patients with metastatic cancers that progressed on ≥1 line of chemotherapy and not expected to survive 12 months (n = 31) were recruited from October 2020 through November 2022. We compared patients who discussed their progressive scans with an oncologist trained in the GIST technique or not (i.e., usual care). A primary outcome was prognostic understanding (e.g., patients reporting a life-expectancy of months) assessed within a week of the scan discussion visit. RESULTS: Oncologists (n = 4) appeared receptive to the Oncolo-GIST intervention and scored nearly perfectly on post-training tests of material mastery after a < 2-h tutorial. Post-scan discussion visit, 100% of patients who met with an Oncolo-GIST-trained clinician understood that their cancer was considered incurable (a 31% improvement from pre-visit) compared with 91% of patients meeting with usual care oncologists (an 18% improvement); 33% of patients who met with an Oncolo-GIST-trained oncologist understood that they likely had months, not years, compared to 18% in the usual care group. No statistically significant differences emerged for these changes, nor for therapeutic alliance, anxiety, or depression scores between groups. CONCLUSION: Oncolo-GIST appears to be an easily learned approach to improve prognostic understanding that neither undermines therapeutic alliances nor increases patients' anxiety or depressive symptoms. Efficacy testing in a larger trial is warranted.

The role of social networks in prognostic understanding of older adults with advanced cancer.

OBJECTIVES: Explore how older patients utilize their social networks to inform prognostic understanding. METHODS: In a pilot study of adults (≥65 years old) with advanced cancer, 16 patients completed surveys, social network maps, and semi-structured interviews exploring with whom they preferred to communicate about their illness. Interviews were analyzed using open-coding, and codes were categorized into emergent themes. Social network maps and themes were analyzed via mixed-methods social network analysis (MMSNA). Three case examples with diverse network characteristics and communication patterns were selected for further analysis. RESULTS: Three overarching themes (i.e., prognostic understanding, social support, and therapeutic alliance) revealed that patients' prognostic understanding was strongly influenced by the quality of the social support patients perceived from members of their social networks. Patients demonstrated prognostic understanding when they reported close relationships and open communication with their network members. Case examples revealed some ways that patients sought information and had better sense of their prognosis when they had supportive social networks. CONCLUSION: Findings illustrate how understanding social networks may provide information on how older adults with cancer seek, share, and process prognostic information.

Measuring a Patient's understanding of their prognosis: An exploratory analysis.

OBJECTIVE: In patients with cancer across the illness trajectory, treatment decisions are often influenced by one's perception of their prognosis (i.e., curability of disease, life expectancy, quality of life). However, research on how patients understand their prognosis (i.e., prognostic understanding) has been limited by simplistic measurement tools that fail to capture the complexity of the construct. This study describes the initial development of a measure of prognostic understanding: the Prognostic Understanding Perceptions Scale (PUPS) for use in patients with advanced cancer. METHOD: An initial pool of 16 candidate items were developed through semi-structured interviews with 15 experts (oncology, psycho-oncology and palliative care professionals) and 30 advanced cancer patients. We investigated the dimensionality, internal item structure, item difficulty and item discrimination of the item pool using exploratory factor analysis (EFA), classical test theory (CTT) and item response theory (IRT) analyses. Convergent and divergent validity were based on correlations between PUPS, terminal illness acknowledgement, and self-report measures of depression, anxiety, hopelessness, and death acceptance. RESULTS: The final measure was comprised of nine items encompassing three factors (perceived curability, illness trajectory, treatment options), yielding strong psychometric properties. CONCLUSION: These results provide preliminarily support for PUPS as a multifaceted measure of prognostic understanding developed for use in patients with advanced cancer. Preliminary findings also highlight the potential utility of the PUPS for clinical settings, as a means of enhancing communication between patients and physicians.

Caregiver-oncologist prognostic concordance, caregiving esteem, and caregiver outcomes.

INTRODUCTION: Caregiver-oncologist concordance regarding the patient's prognosis is associated with worse caregiver outcomes (e.g., depressive symptoms), but mechanisms underpinning these associations are unclear. We explored whether caregiving esteem mediates these associations. METHODS: At enrollment, caregivers and oncologists used a 5-point ordinal scale to estimate patient survival; identical responses were considered concordant. At 4-6 weeks, caregivers completed an assessment of the extent to which caregiving imparts self-esteem (Caregiver Reaction Assessment self-esteem subscale; range 0-5; higher score indicates greater esteem). They also completed Patient Health Questionnaire-2 (PHQ-2) for depressive symptoms, Distress Thermometer, and 12-Item Short Form Survey for quality of life (QoL). Mediation analysis with bootstrapping (PROCESS macro by Hayes) was used to estimate the extent to which caregiving mediated the effects of prognostic concordance on caregiver outcomes through caregiving esteem. RESULTS: Prognostic concordance occurred in 28% the caregiver-oncologist dyads; 85% of the discordance were due to caregivers estimating a longer patient's survival. At 4-6 weeks, mean caregiving esteem score was 4.4 (range 1.5-5.0). Lower caregiving esteem mediated the associations of concordance with higher PHQ-2 [indirect effect = 0.12; 95% Confidence Interval (CI) 0.03, 0.27], greater distress (indirect effect =0.25; 95% CI 0.08, 0.48), and poorer QoL (indirect effect = -1.50; 95% CI -3.06, -0.41). Caregiving esteem partially mediated 39%, 64%, and 48% of the associations between caregiver-oncologist concordance and PHQ-2, distress, and SF-12, respectively. CONCLUSIONS: Caregiver-oncologist concordance was associated with lower caregiving esteem. Lower caregiving esteem mediated the negative relationship between caregiver-oncologist concordance and caregiver outcomes.

The relationship between emotional well-being and understanding of prognosis in patients with acute myeloid leukemia (AML).

PURPOSE: Adults with acute myeloid leukemia (AML) face considerable distress and often have a poor prognosis. However, little is known about these patients' perceptions of prognosis and how this relates to emotional well-being (EWB). METHODS: We conducted a prospective, observational study of 50 adult patients with AML initiating chemotherapy, and surveyed them longitudinally for 6 months about their prognosis, treatment goals, quality of life, and EWB (by FACT-G). We derived a prognostic estimate for each patient based on data from published trials summarized in National Comprehensive Care Network Guidelines. We used descriptive statistics and longitudinal modeling to test the hypothesis that more accurate prognostic awareness is associated with worse EWB. RESULTS: Most patients (n = 43; 86%) had an objectively poor prognosis attributable to relapsed disease, complex karyotype, or FLT3 mutation. Yet, 74% of patients reported expecting a 50% or greater chance of cure. Patients with a poor prognosis more often had discordant prognostic estimates, compared to those with favorable risk AML (OR = 7.25, 95% CI 1.21, 43.37). Patient-reported prognostic estimates did not vary significantly over time. At baseline, patients who better understood their prognosis had worse EWB and overall quality-of-life scores (EWB 12 vs. 19.5; p = 0.01; FACT-G 65 vs. 75.5; p = 0.01). CONCLUSION: Patients with AML overestimate their prognosis, and awareness of a poor prognosis is associated with worse emotional well-being. Efforts are needed to improve patients' understanding of their prognosis, and to provide more psychosocial support and attention to well-being as part of high-quality leukemia care.

Longitudinal Assessment of Prognostic Understanding in Patients with Advanced Lung Cancer and Its Association with Their Psychological Distress.

BACKGROUND: Accurate prognostic understanding in patients with advanced cancer is essential for shared decision making; however, patients may experience psychological burden through knowing the incurable nature of advanced cancer. It has been unclear how their prognostic understanding fluctuates and whether accurate prognostic understanding is associated with psychological distress from the time of diagnosis over time. MATERIALS AND METHODS: We longitudinally investigated prognostic understanding in 225 patients with newly diagnosed advanced lung cancer at 16 hospitals in Japan until 24 months after diagnosis. We examined associated factors with being consistently accurate in prognostic understanding, especially focusing on its association with psychological well-being. RESULTS: The proportion of patients with an inaccurate prognostic understanding remained approximately 20% over time with the presence of patients with inconsistent understanding. Patients with consistently accurate prognostic understanding showed a significantly lower Emotional Well-Being subscale score at both 3 and 6 months after diagnosis (p = .010 and p = .014, respectively). In multivariate analyses, being consistently accurate in prognostic understanding was significantly associated with female gender and higher lung cancer-specific symptom burden at 3 months (p = .008 and p = .005, respectively) and lower emotional well-being at 6 months (p = .006). CONCLUSION: Although substantial proportions of patients with advanced lung cancer had inaccurate prognostic understanding from the time of diagnosis over time, patients with consistently accurate prognostic understanding experienced greater psychological burden. Our findings highlight the importance of continuous psychological care and support for patients who understand their severe prognosis accurately. IMPLICATIONS FOR PRACTICE: This study demonstrated that approximately 20% of patients with advanced lung cancer had an inaccurate understanding about their prognosis, not only at the time of diagnosis but also at the later time points. Being consistently accurate in prognostic understanding was significantly associated with elevated levels of psychological distress. Although accurate prognostic understanding is essential for decision making for treatment and advance care planning, health care providers should be aware of psychological burdens in patients that accept their severe prognosis accurately. Appropriate care and support for such patients are warranted from diagnosis over time.

Illness and prognostic understanding in patients with hematologic malignancies.

It is critical for patients with hematologic malignancies to have an accurate understanding of their illness and prognosis to make informed treatment decisions. Illness and prognostic understanding have primarily been studied in patients with solid tumors, however, data in patients with hematologic malignancies are rapidly growing. Patients with hematologic malignancies often face a unique and unpredictable illness trajectory with the possibility of cure persisting even in relapsed and refractory settings. These patients often require intensive therapies such as high-dose chemotherapy, hematopoietic stem cell transplantation (HCT), or CAR T-cell therapy, which carry with them significant risk of morbidity, mortality, and prognostic uncertainty. In this review article, we first described the current literature on illness and prognostic understanding in patients with hematologic malignancies including 1) patients' varying desire for prognostic information; (2) patients' prognostic misperceptions, (3) the association between patients' prognostic understanding and their psychological outcomes; and (4) barriers to prognostic understanding. Next, we examined insights gained from the literature about illness and prognostic understanding in patients with solid tumors to guide our understanding of the research gaps in hematologic malignancies. Future studies are needed to better delineate the longitudinal relationship between prognostic understanding, psychological distress, and coping in patients with hematologic malignancies. Strategies such as communicating effectively about prognosis, cultivating adaptive coping in the face of a terminal prognosis, and integrating specialty palliative care for patients with hematologic malignancies have the potential to improve patients' prognostic understanding and their quality of life and care.

The Effect of Disclosing Life Expectancy Information on Patients' Prognostic Understanding: Secondary Outcomes From a Multicenter Randomized Trial of a Palliative Chemotherapy Educational Intervention.

CONTEXT: Many advanced patients with cancer have unrealistic prognostic expectations. OBJECTIVES: We tested whether offering life expectancy (LE) statistics within palliative chemotherapy (PC) education promotes realistic expectations. METHODS: In this multicenter trial, patients with advanced colorectal and pancreatic cancers initiating first or second line PC were randomized to usual care versus a PC educational tool with optional LE information. Surveys at two weeks and three months assessed patients' review of the LE module and their reactions; at three months, patients estimated their LE and reported occurrence of prognosis and end-of-life (EOL) discussions. Wilcoxon tests and proportional odds models evaluated between-arm differences in LE self-estimates, and how realistic those estimates were (based on cancer type and line of treatment). RESULTS: From 2015 to 2017, 92 patients were randomized to the intervention and 94 to usual care. At baseline most patients (80.9%) wanted "a lot" or "as much information as possible" about the impact of chemotherapy on LE. Among patients randomized to the intervention, 52.0% reviewed the LE module by two weeks and 66.7% by three months-of whom 88.2% reported the information was important, 31.4% reported it was upsetting, and 3.9% regretted reviewing it. Overall, patients' LE self-estimates were very optimistic; 71.4% of patients with colorectal cancer estimated greater than five years; 50% pancreatic patients estimated greater than two years. The intervention had no effect on the length or realism of patients' LE self-estimates, or on the occurrence of prognostic or EOL discussions. CONCLUSIONS: Offering LE information within a PC educational intervention had no effect on patients' prognostic expectations.

Prognostic Awareness in Caregivers of Patients with Incurable Cancer.

Background: Little is known about how patients with incurable cancer and caregivers differ in their prognostic awareness, and the relationship between caregiver prognostic awareness and their psychological distress. Objective: To investigate prognostic awareness in caregivers of patients with incurable cancer and prognostic discordance in patient-caregiver dyads and its association with psychological distress. Design: This is a cross-sectional study. Setting/Subjects: In total, subjects were 390 caregivers of adults with incurable lung, gastrointestinal, and brain cancers at a cancer center in the northeastern United States. Measurements: The Prognosis and Treatment Perceptions Questionnaire was used to assess prognostic awareness and Hospital Anxiety and Depression Scale to assess psychological distress. Results: In total, 39.7% (n = 147/370) and 17.3% (n = 64/370) caregivers reported clinically significant anxiety and depression symptoms. And 53.7% of caregivers reported the patients' cancer as "curable" and 44.1% reported the cancer was "not terminal." Caregivers' report of curability was not associated with their anxiety (odds ratio [OR] = 0.99, p = 0.93) or depression (OR = 1.05, p = 0.32) symptoms. Among 42.5% (124/292) and 26.0% (76/292) of dyads (n = 292), both patients and their caregivers agreed in their perception of the cancer as curable and incurable, respectively. In 19.9% of dyads (n = 58), patients reported their cancer as curable, while their caregivers reported it as incurable. In 11.6% of dyads (n = 34), patients reported the cancer as incurable while caregivers reported it as curable. Conclusions: More than half of caregivers have misperceptions about the patients' likelihood of cure, and one-third of patient-caregiver dyads have discordant perceptions. Supportive care interventions may facilitate conversations and enhance prognostic understanding in patients with incurable cancer and their caregivers.

A novel decision aid for acute myeloid leukemia: a feasibility and preliminary efficacy trial.

PURPOSE: Acute myeloid leukemia (AML) is a hematologic malignancy characterized by a poor prognosis but also a paradoxical possibility of cure. This renders decision-making complex and imminent. Unfortunately, many patients with AML misestimate their prognosis and treatment risk. While decision aids can improve illness understanding and reduce decisional conflict, there are no validated decision aids for AML. We developed and tested a novel AML decision aid (NCT03442452). METHODS: Patients (n = 20) were recruited at Duke University from May 2018 to February 2019. Participants completed assessments of AML knowledge and decisional conflict, before and after using the electronic decision aid. The primary endpoint was feasibility (endpoint met if > 80% of study participants completed all study components). Secondary analyses of efficacy were conducted using paired t tests for dependent pre-/post-samples. RESULTS: The primary endpoint of feasibility was met (100% of participants completed all study components). Secondary analyses showed improved knowledge and reduced decisional conflict after using the decision aid. Knowledge scores improved from a mean of 11.8 (out of 18) correct items at baseline to 15.1 correct items after using the decision aid (mean difference 3.35; p < 0.0001). Decisional conflict scores reduced significantly from baseline to post-test as well (mean difference - 6.5; p = 0.02). CONCLUSION: These findings suggest that our AML decision aid is a useful tool to improve the patient experience and promote shared decision-making in AML. A randomized efficacy trial is planned.

Factors associated with prognostic awareness in patients with cancer: A systematic review.

OBJECTIVES: Prognostic awareness relates to patients' capacity to understand their prognosis and the likely illness trajectory. Based on the current evidence, accurate PA is associated with decrease in uncertainty, depresivity, and anxiety and with increase in quality of life. However, other studies found also negative associations of PA and quality of life and mental health. This systematic review synthesizes the available literature on factors associated with accurate prognostic awareness in patients with cancer. METHODS: Four databases were systematically searched for studies assessing prognostic awareness in patients with cancer. In these studies, we looked for factors positively or negatively associated with prognostic awareness. Included studies were critically appraised for methodological quality. RESULTS: We screened 28 078 studies and included 70. In these studies, 102 factors were found to be related to prognostic awareness positively or negatively. Identified factors were divided into seven groups: demographic factors, factors related to coping, health condition factors, psychological factors, factors associated with end-of-life care, factors related to communication, and factors related to relatives. Prognostic awareness differs according to age, personality, communication with doctor, disease stage, or being outpatient. For some factors such as depression, anxiety, or quality of life, higher level of these factors was found to be associated with accurate and inaccurate prognostic awareness. CONCLUSIONS: Prognostic awareness is a complex phenomenon associated with various positive and negative associations for patients with cancer. Clinicians must consider individual preferences and values of patients and their families when discussing prognosis and must be prepared for potential adverse outcomes.

Patient expectations of benefit from systemic treatments for metastatic prostate cancer.

BACKGROUND: Metastatic prostate cancer is incurable, but systemic therapies can improve quality of life and prolong survival. Accurate perceptions of treatment risks and benefits are vital as patients with metastatic disease make treatment decisions. We assessed treatment-related expectations for benefit among patients with metastatic prostate cancer and explored associated sociodemographic characteristics. METHODS: Men with metastatic prostate cancer (N = 100) completed surveys assessing their treatment-related expectations for cancer cure, symptom relief, and prolonged life expectancy. Frequencies were used to describe the proportions of reported expectations. Fisher's exact tests were used to assess the associations of sociodemographic characteristics with treatment expectations. RESULTS: One third (33%) of participants believed treatment was at least a little likely to cure their metastatic cancer. Most participants believed treatment could provide symptom relief (76%) and extend life expectancy (95%). Among participants reporting that cancer cure was at least a little likely vs not at all, more men identified as non-white (24% vs 5%; P = .01), self-reported good health (90% vs 58%; P < .01), and had greater optimism (78% vs 47%; P < .01). Among participants reporting that symptom relief was at least a little likely vs not at all, more men were less than 70 years old (62% vs 0%; P = .01). CONCLUSION: A large proportion of patients with metastatic prostate cancer reported beliefs inconsistent with understanding that treatment was not curative. Race, better self-reported health, and greater optimism were related to unrealistic expectations. Efforts to ensure alignment of patient and clinician expectations may facilitate more effective shared decision-making for treating metastatic disease.

Patient-hematologist discordance in perceived chance of cure in hematologic malignancies: A multicenter study.

BACKGROUND: Ensuring that patients with hematologic malignancies have an accurate understanding of their likelihood of cure is important for informed decision making. In a multicenter, longitudinal study, the authors examined discordance in patients' perception of their chance of cure versus that of their hematologists, whether patient-hematologist discordance changed after a consultation with a hematologist, and factors associated with persistent discordance. METHODS: Before and after consultation with a hematologist, patients were asked about their perceived chance of cure (options were <10%, 10%-19%, and up to 90%-100% in 10% increments, and "do not wish to answer"). Hematologists were asked the same question after consultation. Discordance was defined as a difference in response by 2 levels. The McNemar test was used to compare changes in patient-hematologist prognostic discordance from before to after consultation. A generalized linear mixed model was used to examine associations between factors and postconsultation discordance, adjusting for clustering at the hematologist level. RESULTS: A total of 209 patients and 46 hematologists from 4 sites were included in the current study. Before consultation, approximately 61% of dyads were discordant, which improved to 50% after consultation (P < .01). On multivariate analysis, lower educational level (

Perceptions of medical status and treatment goal among older adults with advanced cancer.

BACKGROUND: Patient-reported medical status and treatment goal are measures of prognostic understanding with demonstrated relationships to important clinical and patient-reported outcomes in the general cancer population. Among older adults, relationships between these measures and other patient-reported (quality of life [QOL], symptoms, functional impairment) and clinical (hospitalization risk, survival) outcomes remains unclear. METHODS: We enrolled patients ≥70 with advanced gastrointestinal cancers, collecting patient-reported medical status (terminally ill vs not), treatment goal (curative vs non-curative), QOL (EORTC-Elderly Cancer Patients), symptoms (Edmonton Symptom Assessment System [ESAS]), and functional impairment (activities of daily living [ADLs]). We also obtained information about hospitalizations and survival. To explore relationships between patient-reported medical status, treatment goal, QOL, symptoms, functional impairment, hospitalizations, and survival, we used regression models adjusted for age, sex, and education. RESULTS: Of 103 patients, 49.5% reported terminally ill status and 64.0% a non-curative treatment goal. Terminally ill status was associated with worse QOL (EORTC illness burden: 53.59 vs 35.26, p = 0.001), higher symptom burden (ESAS: 28.15 vs 16.79, p = 0.002), more functional impairment (ADLs: 3.63 vs 5.24, p = 0.006), greater hospitalization risk (HR = 2.41, p = 0.020), and worse survival (HR = 1.93, p = 0.010). We did not find associations between patient-reported treatment goal and these outcomes. CONCLUSIONS: In older adults with advanced cancer, report of terminally ill status was associated with other important patient-reported and clinical outcomes, suggesting disease severity may inform illness perceptions. We did not find similar associations for patient-reported treatment goal, indicating that questions related to medical status and treatment goal measure different constructs and more nuanced measures are needed.

Palliative Chemotherapy or Radiation and Prognostic Understanding among Advanced Cancer Patients: The Role of Perceived Treatment Intent.

Background: As patients' accurate understanding of their prognosis is essential for informed end-of-life planning, identifying associated factors is important. Objective: We examine if receiving palliative chemotherapy or radiation, and the perception of those treatments as curative or noncurative, is associated with prognostic understanding. Design: Cross-sectional analyses from a multisite, observational study. Setting/Subjects: Patients with advanced cancers refractory to at least one chemotherapy regimen (N = 334). Measurements: In structured interviews, patients reported whether they were receiving chemotherapy or radiation, and whether its intent was curative or not. Their responses were categorized into three groups: patients not receiving chemotherapy/radiation (no cancer treatment group); patients receiving chemotherapy/radiation and misperceiving it as curative (treatment misperception group); and patients receiving chemotherapy/radiation and accurately perceiving it as noncurative (accurate treatment perception group). Patients also reported on various aspects of their prognostic understanding (e.g., life expectancy). Results: Eighty-six percent of the sample was receiving chemotherapy or radiation; of those, 16.7% reported the purpose of treatment to be curative. The no-treatment group had higher prognostic understanding scores compared with the treatment misperception group (adjusted odds ratio [AOR] = 5.00, p < 0.001). However, the accurate treatment perception group had the highest prognostic understanding scores in comparison to the no-treatment group (AOR = 2.04, p < 0.05) and the treatment misperception group (AOR = 10.19, p < 0.001). Conclusions: Depending on patient perceptions of curative intent, receipt of palliative chemotherapy or radiation is associated with better or worse prognostic understanding. Research should examine if enhancing patients' understanding of treatment intent can improve accurate prognostic expectations.