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.

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.

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.

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.

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 (

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-Clinician Discordance in Perceptions of Treatment Risks and Benefits in Older Patients with Acute Myeloid Leukemia.

BACKGROUND: Older patients (≥60 years) with acute myeloid leukemia (AML) face difficult decisions regarding treatment with "intensive" chemotherapy that carries significant toxicity for a small chance of a cure versus "nonintensive" chemotherapy to control the disease, but with fewer side effects. However, studies of how these patients understand the risks and benefits of such treatments are lacking. METHODS: We conducted a longitudinal study of older patients newly diagnosed with AML assessing patients' (n = 100) and oncologists' (n = 11) perceptions of treatment-related mortality at enrollment and prognosis at 1 month. We examined concordance between patients' and oncologists' perceptions using Cohen's kappa (κ < 0.10 indicates little/no concordance). RESULTS: We enrolled patients within 72 hours of initiating intensive (n = 50) or nonintensive (n = 50) chemotherapy. Whereas 91% of patients reported that they were "somewhat" to "extremely likely" to die from treatment, oncologists estimated that only 12% were at high risk of dying because of treatment (κ = -0.09). Ninety percent of patients reported that they were "somewhat" or "very likely" to be cured of their AML, whereas oncologists estimated this chance of cure for only 31% of patients (κ = 0.05). Among patients receiving intensive chemotherapy, 98% reported that they were "somewhat" or "very likely" to be cured, whereas their oncologists estimated this likelihood of cure for only 49% (κ = 0.04); among those receiving nonintensive chemotherapy and their clinicians, these proportions were 82% and 13%, respectively (κ = 0.03). Patients who indicated a lower likelihood of cure reported significantly higher depression symptoms (p = .03). CONCLUSION: Older patients with AML overestimate the risks and benefits of treatment. Interventions to facilitate communication and enhance patients' understanding of the goals of therapy and treatment risk are needed. IMPLICATIONS FOR PRACTICE: Older patients with acute myeloid leukemia (AML) are confronted with challenging decisions regarding treatment with "intensive" chemotherapy that carries significant toxicity for a small chance of a cure versus "nonintensive" chemotherapy to control the disease, but with fewer side effects. A clear understanding of the likely outcome and risks of the various treatment strategies is essential for these patients to make informed decisions about their care. This article reports that older patients with AML overestimate both the risks and benefits of treatment and have substantial misperceptions about their prognosis. Interventions to enhance patients' understanding of their prognosis and treatment risk are needed.

Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer.

BACKGROUND: Patients' perception of their prognosis has an impact on their decisions about medical care. However, the relations between prognostic understanding and quality of life (QoL) and mood are unknown. The objectives of this study were to assess perceptions of prognosis and preferences for prognostic information among patients with advanced cancer and to explore the associations of prognostic understanding with QoL and mood. METHODS: Fifty patients were assessed within 6 to 12 weeks of initiating chemotherapy for advanced gastrointestinal cancers. A 13-item questionnaire was used to assess patients' information preferences, perceptions of their prognosis and goal of therapy, and communication about end-of-life care. The Functional Assessment of Cancer Therapy-General and the Hospital Anxiety and Depression Scale were used to assess QoL and mood, respectively. RESULTS: Fifty of 62 (80%) consecutive, eligible patients were enrolled. Thirty-eight of 50 patients (75%) wanted to know as many details as possible about their cancer diagnosis and treatment. However, 25 of 50 patients (50%) stated that the goal of therapy was to "cure their cancer," and only 10 of 49 patients (22%) reported having a discussion about end-of-life preferences with their oncologist. Patients who acknowledged their illness as terminal reported lower QoL (P=.005) and higher anxiety (P=.003) compared with those who did not perceive themselves as being terminally ill. CONCLUSIONS: Although patients desired detailed information about their illness, half incorrectly perceived their cancer as curable. Accurate prognostic understanding was associated with lower QoL and worse anxiety. Interventions to improve patients' prognostic understanding while providing adequate psychosocial support are warranted.

Associations between accurate prognostic understanding and end-of-life care preferences and its correlates among Taiwanese terminally ill cancer patients surveyed in 2011-2012.

OBJECTIVE: Adequate knowledge of prognosis is a prerequisite for planning appropriate end-of-life (EOL) care. However, questions remain about whether the association between prognostic understanding and EOL-care intensity reflects terminally ill cancer patients' preferences for EOL care. This study investigated the associations between accurate prognostic understanding and EOL-care preferences, and identified correlates of accurate prognostic understanding. METHODS: A cross-sectional survey of 2452 terminally ill cancer patients from 23 hospitals throughout Taiwan. RESULTS: Nearly half the participants (49.80%) accurately understood their prognosis. These patients were significantly more likely to prefer comfort-oriented care as their goal for EOL care, but less likely to prefer life-prolonging treatments. Accurately understanding prognosis decreased the likelihood of preferring intensive care unit care, cardiac pulmonary resuscitation, cardiac massage, intubation, and mechanical ventilation support, but increased preference for hospice care. Participants were significantly more likely to accurately understand their prognosis if they were male, younger, better educated, with a stronger preference for physicians to disclose their prognosis to them, and receiving care at a hospital accredited as a medical center and in northwest Taiwan. The likelihood of accurate prognostic understanding was lower for patients recently (≤ 12 months) diagnosed with cancers with better prognosis and hematologic malignancies than for lung cancer patients. CONCLUSIONS: Accurately understanding prognosis is associated with fewer preferences for life-sustaining treatments and is correlated with both patient and institutional characteristics. Interventions should be developed to improve accurate prognostic understanding, thus facilitating informed EOL-care decisions that may limit the use of aggressive interventions.

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.

Associations of quality of social support and accurate beliefs about curability among older adults with advanced cancer.

INTRODUCTION: Supporting older adults with advanced cancer to better understand their disease and its prognosis is important for shared decision-making. Social support is a potentially modifiable factor that may influence disease understanding. In this study, we examined the associations of quantity and quality of social support with patients' beliefs about the curability of their advanced cancer. MATERIALS AND METHODS: We performed a secondary analysis of a cluster-randomized trial that recruited older adults aged ≥70 with advanced incurable cancer. At enrollment, patients completed the Older Americans Resources and Services (OARS) Medical Social Support form that measures both quantity (number of close friends and relatives) and quality of social support. Quality of social support was measured using 12 questions in instrumental and emotional support, each ranging from 1 (none of the time) to 5 (all of the time). Higher cumulative scores indicated greater quality of support. For beliefs about curability, patients were asked, "What do you believe are the chances that your cancer will go away and never come back with treatment?" Responses were 0 %, <50 %, 50/50, >50 %, and 100 %. Ordinal logistic regression was used to investigate the association of quantity and quality of social support with beliefs about curability, adjusting for potential confounders. RESULTS: We included 347 patients; mean age was 76.4 years and 91 % were white. Quantity of social support was not associated with belief in curability [adjusted odds ratio (AOR) 1.03, 95 % confidence interval (CI) (0.92, 1.16)]. For every unit increase in the quality of social support (OARS Medical Social Support score), the odds of believing in curability decreased by 26.7 % [AOR 0.73, 95 % CI (0.56, 0.97)]. DISCUSSION: Our study demonstrated that the quality, but not the quantity, of social support was associated with patients' beliefs about curability. These findings suggest that bolstering social support may directly enhance disease understanding. This insight informs supportive care interventions that specifically address disease comprehension among patients.

Prognostic understanding among caregivers of persons with dementia: A scoping review.

INTRODUCTION: Despite the influence of caregivers' prognostic understanding (PU) on the end-of-life care for persons with dementia (PwDs), the literature on PU of caregivers of PwDs is sparse. We conducted a scoping review to understand the variation in existing definitions and measurement of caregivers' PU for PwDs. We also aimed to synthesize the prevalence of caregivers' correct PU and the factors (caregiver, PwD and healthcare related) associated with it. METHODS: We systematically searched four databases-MEDLINE/PubMed, EMBASE, SCOPUS, and CINAHL. We included studies where study participants were informal caregivers, their PU was assessed, and measurement tool was implicitly described. We excluded studies where study participants were paid caregivers. RESULTS: Out of the 2160 studies screened, we included 15 published between 2009 and 2023. The included studies measured caregivers' PU as limited estimated life expectancy, understanding that dementia is incurable and life-limiting. Estimated life expectancy was the most common measure of PU among caregivers to PwDs. Across studies, around 90% of caregivers acknowledged dementia as incurable, while only about 40% acknowledged it as life-limiting. Caregivers of PwDs who were sicker (acute medical problems or functional dependence) and those who had discussed goals of care with healthcare providers were more likely to have more accurate PU for PwDs. Caregivers' with better PU were more likely to state a preference for comfort-focused care, and their PwDs were likely to receive fewer burdensome interventions and experience greater comfort during the dying process. CONCLUSION: Our findings highlight the need for a comprehensive measure to assess the multifaceted nature of caregivers' PU, delve deeper into factors influencing caregivers' PU, and explore its impact on caregivers themselves.

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.

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.

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.

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.

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.

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.