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Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes. Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes. Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care. Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer. Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety. Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant. Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.

BackgroundPatients with advanced, incurable cancer who understand their illness is incurable are more likely to prefer hospice care at the end of life compared with patients who believe their illness is curable. To the authors' knowledge, it is unclear whether patient-caregiver agreement regarding perceived prognosis is associated with hospice enrollment.MethodsThe current study examined the prospective relationship between patient-caregiver agreement concerning perceived prognosis and hospice enrollment in the last 30 days of life. Data were collected during a cluster randomized controlled trial examining a communication intervention for oncologists and patients with advanced cancer and their caregivers. At the time of study entry, patients and caregivers (141 dyads) were categorized as endorsing a "good" prognosis if they: 1) reported a >50% chance of surviving ≥2 years; or if they 2) predicted that the patient's quality of life 3 months into the future would be ≥7 on an 11-point scale.ResultsApproximately one-fifth of dyads agreed on a poor prognosis whereas approximately one-half disagreed regarding prognosis. In approximately one-third of dyads, patients and caregivers both believed the patient's future quality of life would be good (34%) and that the patient would live for ≥2 years (30%). Patients in these dyads were less likely to enroll in hospice compared with patients in dyads who disagreed and those who agreed on a shorter life expectancy and poor future quality of life.ConclusionsDyadic understanding of patients' projected life expectancy and future quality of life appears to be predictive of care received at the end of life. Improving rates of hospice enrollment may be best achieved with dyadic interventions.

ContextAlthough patient and physician characteristics are thought to be predictive of discretionary interventions at the end of life (EoL), few studies have data on both parties.ObjectiveTo test the hypothesis that patient preferences and physician attitudes are both independently associated with discretionary interventions at the EoL.MethodsWe report secondary analyses of data collected prospectively from physicians (n = 38) and patients with advanced cancer (n = 265) in the Values and Options in Cancer Care study. Predictor variables were patient attitudes toward EoL care and physician-reported comfort with medical paternalism, assessed indirectly using a modified version of the Control Preference Scale. We explored whether the magnitude of the physician variable was influenced by the inclusion of particular patient treatment-preference variables (i.e., effect modification). Outcomes were a chemotherapy use score (≤14 days before death [scored 2], 15-31 days before death [scored 1], and >31 days [scored 0]) and an emergency department visit/inpatient admission score (two or more admissions in the last 31 days [scored 2], one admission [1], and 0 admissions [0]) in the last month of life.ResultsChemotherapy scores were nearly 0.25 points higher if patients expressed a preference for experimental treatments with unknown benefit at study entry (0.238 points, 95% CI = 0.047-0.429) or reported an unfavorable attitude toward palliative care (0.247 points, 95% CI = 0.047-0.450). A two-standard deviation difference in physician comfort with medical paternalism corresponded to standardized effects of 0.35 (95% CI = 0.03-0.66) for chemotherapy and 0.33 (95% CI = 0.04-0.61) for emergency department visits/inpatient admissions. There was no evidence of effect modification.ConclusionPatient treatment preferences and physician attitudes are independently associated with higher levels of treatment intensity before death. Greater research, clinical, and policy attention to patient treatment preferences and physician comfort with medical paternalism might lead to improvements in care of patients with advanced disease.

BackgroundPain management racial disparities exist, yet it is unclear whether disparities exist in pain management in advanced cancer.ObjectiveTo examine the effect of race on physicians' pain assessment and treatment in advanced lung cancer and the moderating effect of patient activation.DesignRandomized field experiment. Physicians consented to see two unannounced standardized patients (SPs) over 18 months. SPs portrayed 4 identical roles-a 62-year-old man with advanced lung cancer and uncontrolled pain-differing by race (black or white) and role (activated or typical). Activated SPs asked questions, interrupted when necessary, made requests, and expressed opinions.ParticipantsNinety-six primary care physicians (PCPs) and oncologists from small cities, and suburban and rural areas of New York, Indiana, and Michigan. Physicians' mean age was 52 years (SD = 27.17), 59% male, and 64% white.Main measuresOpioids prescribed (or not), total daily opioid doses (in oral morphine equivalents), guideline-concordant pain management, and pain assessment.Key resultsSPs completed 181 covertly audio-recorded visits that had complete data for the model covariates. Physicians detected SPs in 15% of visits. Physicians prescribed opioids in 71% of visits; 38% received guideline-concordant doses. Neither race nor activation was associated with total opioid dose or guideline-concordant pain management, and there were no interaction effects (p > 0.05). Activation, but not race, was associated with improved pain assessment (ẞ, 0.46, 95% CI 0.18, 0.74). In post hoc analyses, oncologists (but not PCPs) were less likely to prescribe opioids to black SPs (OR 0.24, 95% CI 0.07, 0.81).ConclusionsNeither race nor activation was associated with opioid prescribing; activation was associated with better pain assessment. In post hoc analyses, oncologists were less likely to prescribe opioids to black male SPs than white male SPs; PCPs had no racial disparities. In general, physicians may be under-prescribing opioids for cancer pain.Trial registrationNCT01501006.

ObjectiveTo identify predictors of participation of patients with advanced cancer in clinical encounters with oncologists and to assess the impact of patient and caregiver participation on perceptions of physician support.MethodsThis is a secondary data analysis from the Values and Options in Cancer Care study, a cluster randomized clinical trial of a patient-centered communication intervention. Patients and caregivers completed pre-visit and post-visit health and communication measures. Audio recorded patient-caregiver (when present)-physician encounters were coded for active patient/caregiver participation behaviors (eg, question asking, expressing concern) and for physicians' facilitative communication (eg, partnership-building, support). Mixed linear regression models were used to identify patient, physician, and situational factors predicting patient and patient plus caregiver communication behaviors and post-visit outcomes.ResultsPhysician partnership building predicted greater expressions of concern and more assertive responses from patients and patient-caregiver pairs. Patients' perceptions of greater connectedness with their physician predicted fewer patient expressions of concern. Patient perceptions of physician respect for their autonomy were lower among patients accompanied by caregivers. Caregiver perceptions of physician respect for patient autonomy decreased with increasing patient age and varied by site.ConclusionsIn advanced cancer care, patient and caregiver communication is affected by ecological factors within their consultations. Physicians can support greater patient participation in clinical encounters through facilitative communication such as partnership-building and supportive talk. The presence of a caregiver complicates this environment, but partnership building techniques may help promote patient and caregiver participation during these visits.

Purpose Some research has suggested that discussion of prognosis can disrupt the patient-physician relationship. This study assessed whether physician discussion of prognosis is associated with detrimental changes in measures of the strength of the patient-physician relationship. Methods This was a longitudinal cohort study of 265 adult patients with advanced cancer who visited 38 oncologists within community- and hospital-based cancer clinics in Western New York and Northern California. Prognostic discussion was assessed by coding transcribed audio-recorded visits using the Prognostic and Treatment Choices (PTCC) scale and by patient survey at 3 months after the clinic visit. Changes in the strength of the patient-physician relationship were computed as differences in patient responses to The Human Connection and the Perceived Efficacy in Patient-Physician Interactions scales from baseline to 2 to 7 days and 3 months after the clinic visit. Results Prognostic discussion was not associated with a temporal decline in either measure. Indeed, a one-unit increase in PTCC during the audio-recorded visit was associated with improvement in The Human Connection scale at 2 to 7 days after the visit (parameter estimate, 0.10; 95% CI, -0.02 to 0.23) and 3 months after the visit (parameter estimate, 0.18; 95% CI, 0.02 to 0.35) relative to baseline. Standardized effect sizes (SES) associated with an increase of two standard deviations in the PTCC at each time point were consistent with small beneficial effects (SES, 0.14 [95% CI, -0.02 to 0.29] at 2 to 7 days; SES, 0.24 [95% CI, 0.02 to 0.45] at 3 months), and lower bounds of CIs indicated that substantial detrimental effects of prognostic discussion were unlikely. Conclusion Prognostic discussion is not intrinsically harmful to the patient-physician relationship and may even strengthen the therapeutic alliance between patients and oncologists.

BackgroundRacial disparities exist in the care provided to advanced cancer patients. This article describes an investigation designed to advance the science of healthcare disparities by isolating the effects of patient race and patient activation on physician behavior using novel standardized patient (SP) methodology.Methods/designThe Social and Behavioral Influences (SBI) Study is a National Cancer Institute sponsored trial conducted in Western New York State, Northern/Central Indiana, and lower Michigan. The trial uses an incomplete randomized block design, randomizing physicians to see patients who are either black or white and who are "typical" or "activated" (e.g., ask questions, express opinions, ask for clarification, etc.). The study will enroll 91 physicians.DiscussionThe SBI study addresses important gaps in our knowledge about racial disparities and methods to reduce them in patients with advanced cancer by using standardized patient methodology. This study is innovative in aims, design, and methodology and will point the way to interventions that can reduce racial disparities and discrimination and draw links between implicit attitudes and physician behaviors.Trial registrationhttps://clinicaltrials.gov/ , #NCT01501006, November 30, 2011.

Purpose To build on results of a cluster randomized controlled trial (RCT) of a combined patient-oncologist intervention to improve communication in advanced cancer, we conducted a post hoc analysis of the patient intervention component, a previsit patient coaching session that used a question prompt list (QPL). We hypothesized that intervention-group participants would bring up more QPL-related topics, particularly prognosis-related topics, during the subsequent oncologist visit. Patients and Methods This cluster RCT with 170 patients who had advanced nonhematologic cancer (and their caregivers) recruited from practices of 24 participating oncologists in western New York. Intervention-group oncologists (n = 12) received individualized communication training; up to 10 of their patients (n = 84) received a previsit individualized communication coaching session that incorporated a QPL. Control-group oncologists (n = 12) and patients (n = 86) received no interventions. Topics of interest identified by patients during the coaching session were summarized from coaching notes; one office visit after the coaching session was audio recorded, transcribed, and analyzed by using linear regression modeling for group differences. Results Compared with controls, more than twice as many intervention-group participants brought up QPL-related topics during their office visits (70.2% v 32.6%; P < .001). Patients in the intervention group were nearly three times more likely to ask about prognosis (16.7% v 5.8%; P =.03). Of 262 topics of interest identified during coaching, 158 (60.3%) were QPL related; 20 (12.7%) addressed prognosis. Overall, patients in the intervention group brought up 82.4% of topics of interest during the office visit. Conclusion A combined coaching and QPL intervention was effective to help patients with advanced cancer and their caregivers identify and bring up topics of concern, including prognosis, during their subsequent oncologist visits. Considering that most patients are misinformed about prognosis, more intensive steps are needed to better promote such discussions.

ImportanceObservational studies demonstrate links between patient-centered communication, quality of life (QOL), and aggressive treatments in advanced cancer, yet few randomized clinical trials (RCTs) of communication interventions have been reported.ObjectiveTo determine whether a combined intervention involving oncologists, patients with advanced cancer, and caregivers would promote patient-centered communication, and to estimate intervention effects on shared understanding, patient-physician relationships, QOL, and aggressive treatments in the last 30 days of life.Design, setting, and participantsCluster RCT at community- and hospital-based cancer clinics in Western New York and Northern California; 38 medical oncologists (mean age 44.6 years; 11 (29%) female) and 265 community-dwelling adult patients with advanced nonhematologic cancer participated (mean age, 64.4 years, 146 [55.0%] female, 235 [89%] white; enrolled August 2012 to June 2014; followed for 3 years); 194 patients had participating caregivers.InterventionsOncologists received individualized communication training using standardized patient instructors while patients received question prompt lists and individualized communication coaching to identify issues to address during an upcoming oncologist visit. Both interventions focused on engaging patients in consultations, responding to emotions, informing patients about prognosis and treatment choices, and balanced framing of information. Control participants received no training.Main outcomes and measuresThe prespecified primary outcome was a composite measure of patient-centered communication coded from audio recordings of the first oncologist visit following patient coaching (intervention group) or enrollment (control). Secondary outcomes included the patient-physician relationship, shared understanding of prognosis, QOL, and aggressive treatments and hospice use in the last 30 days of life.ResultsData from 38 oncologists (19 randomized to intervention) and 265 patients (130 intervention) were analyzed. In fully adjusted models, the intervention resulted in clinically and statistically significant improvements in the primary physician-patient communication end point (adjusted intervention effect, 0.34; 95% CI, 0.06-0.62; P = .02). Differences in secondary outcomes were not statistically significant.Conclusions and relevanceA combined intervention that included oncologist communication training and coaching for patients with advanced cancer was effective in improving patient-centered communication but did not affect secondary outcomes.Trial registrationclinicaltrials.gov Identifier: NCT01485627.

ImportancePatients with advanced cancer often report expectations for survival that differ from their oncologists' expectations. Whether patients know that their survival expectations differ from those of their oncologists remains unknown. This distinction is important because knowingly expressing differences of opinion is important for shared decision making, whereas patients not knowing that their understanding differs from that of their treating physician is a potential marker of inadequate communication.ObjectiveTo describe the prevalence, distribution, and proportion of prognostic discordance that is due to patients' knowingly vs unknowingly expressing an opinion that differs from that of their oncologist.Design, setting, and participantsCross-sectional study conducted at academic and community oncology practices in Rochester, New York, and Sacramento, California. The sample comprises 236 patients with advanced cancer and their 38 oncologists who participated in a randomized trial of an intervention to improve clinical communication. Participants were enrolled from August 2012 to June 2014 and followed up until October 2015.Main outcomes and measuresWe ascertained discordance by comparing patient and oncologist ratings of 2-year survival probability. For discordant pairs, we determined whether patients knew that their opinions differed from those of their oncologists by asking the patients to report how they believed their oncologists rated their 2-year survival.ResultsAmong the 236 patients (mean [SD] age, 64.5 [11.4] years; 54% female), 161 patient-oncologist survival prognosis ratings (68%; 95% CI, 62%-75%) were discordant. Discordance was substantially more common among nonwhite patients compared with white patients (95% [95% CI, 86%-100%] vs 65% [95% CI, 58%-73%], respectively; P = .03). Among 161 discordant patients, 144 (89%) did not know that their opinions differed from that of their oncologists and nearly all of them (155 of 161 [96%]) were more optimistic than their oncologists.Conclusions and relevanceIn this study, patient-oncologist discordance about survival prognosis was common and patients rarely knew that their opinions differed from those of their oncologists.