Search

Background: Although many older patients with end-stage renal disease and limited prognoses prefer conservative management (CM), it is not widely offered in the United States. Moreover, there is a dearth of US-based literature reporting clinical experience with shared decision making regarding CM of advanced chronic kidney disease (CKD).Methods: We describe the clinical experience of 13 patients who opted for CM at the University of Rochester Medical Center's CKD clinic during 2016-2017. Main outcomes include: (1) reason for choosing CM, (2) completion of advance directives, (3) location of death, and (4) utilization of hospice service. Patients' reasons for choosing CM were categorized into 4 broad categories based on a review of their electronic medical records. A retrospective chart review conducted by 2 reviewers determined the status of advance care planning, hospice referral, and place of death.Results: The mean age of these patients was 81.8 years (SD 7.3). Their reasons for choosing CM included: poor prognoses; a wish to maintain their quality of life; their desire for a dignified life closure; and the intention to protect family members from having to see them suffer, based on their own memory of having witnessed a relative on dialysis previously. A total of 8 patients died: all received hospice services, 6 died at home, one at a nursing home, and one at a hospital. Advance care planning was completed in 100% of the cases. Symptoms were managed in collaboration with primary care physicians.Conclusion: Patients' decisions to choose CM were influenced by their values and previous experience with dialysis, in addition to comorbidities and limited prognoses. Promoting the choice of CM in the United States will require training of clinicians in primary palliative care competencies, including communication and decision-making skills, as well as basic symptom management proficiencies. [ABSTRACT FROM AUTHOR]

Abstract Background Cancer health disparities affecting low-income and minority patients are well documented. Root-causes are multifactorial, including diagnostic and treatment delays, social and financial barriers, and poor communication. Patient navigation and communication coaching (activation) are potential interventions to address disparities in cancer treatment. The purpose of this clinical trial is to test the effectiveness of an intervention combining patient navigation and activation to improve cancer treatment. Methods/Design The Rochester Patient Navigation Research Program (PNRP) is a National Cancer Institute-sponsored, patient-level randomized trial (RCT) of patient navigation and activation, targeting newly-diagnosed breast and colorectal cancer patients in Rochester, NY. The goal of the program is to decrease cancer health disparities by addressing barriers to receipt of cancer care and promoting patient self-efficacy. The intervention uses trained, paraprofessional patient navigators recruited from the target community, and a detailed training and supervisory program. Recruited patients are randomly assigned to receive either usual care (except for baseline and follow-up questionnaires and interviews) or intervention. The intervention patients receive tailored assistance from their patient navigators, including phone calls, in-person meetings, and behind-the-scenes coordination of care. A total of 344 patients have been recruited. Outcomes measured at three month intervals include timeliness of care, patient adherence, patient satisfaction, quality of life, self-efficacy, health literacy, and cancer knowledge. Discussion This unique intervention combining patient navigation and patient activation is designed to address the multifactorial problem of cancer health disparities. If successful, this study will affect the design and implementation of patient navigation programs. Trials Registration clinicaltrials.gov identifier NCT00496678

Background: Disagreements between patients and caregivers about treatment benefits, care decisions, and patients' health are associated with increased patient depression as well as increased caregiver anxiety, distress, depression, and burden. Understanding the factors associated with disagreement may inform interventions to improve the aforementioned outcomes. Methods: For this analysis, baseline data were obtained from a cluster‐randomized geriatric assessment trial that recruited patients aged ≥70 years who had incurable cancer from community oncology practices (University of Rochester Cancer Center 13070; Supriya G. Mohile, principal investigator). Patient and caregiver dyads were asked to estimate the patient's prognosis. Response options were 0 to 6 months, 7 to 12 months, 1 to 2 years, 2 to 5 years, and >5 years. The dependent variable was categorized as exact agreement (reference), patient‐reported longer estimate, or caregiver‐reported longer estimate. The authors used generalized estimating equations with multinomial distribution to examine the factors associated with patient‐caregiver prognostic estimates. Independent variables were selected using the purposeful selection method. Results: Among 354 dyads (89% of screened patients were enrolled), 26% and 22% of patients and caregivers, respectively, reported a longer estimate. Compared with dyads that were in agreement, patients were more likely to report a longer estimate when they screened positive for polypharmacy (β = 0.81; P =.001), and caregivers reported greater distress (β = 0.12; P =.03). Compared with dyads that were in agreement, caregivers were more likely to report a longer estimate when patients screened positive for polypharmacy (β = 0.82; P =.005) and had lower perceived self‐efficacy in interacting with physicians (β = −0.10; P =.008). Conclusions: Several patient and caregiver factors were associated with patient‐caregiver disagreement about prognostic estimates. Future studies should examine the effects of prognostic disagreement on patient and caregiver outcomes. Nearly one‐half (48%) of older patients and caregivers disagree with each other about the patient's prognosis; specifically, 26% of patients and 22% of caregivers report a longer estimate of the patient's prognosis. Caregiver distress, patient communication self‐efficacy, polypharmacy, and oncologist sex are associated with patient‐caregiver agreement about prognostic estimates. [ABSTRACT FROM AUTHOR]

Objectives: The well‐being of doctors is at risk, as evidenced by high burnout rates amongst doctors around the world. Alarmingly, burned‐out doctors are more likely to exhibit low levels of professionalism and provide suboptimal patient care. Research suggests that burnout and the well‐being of doctors can be improved by mindfulness‐based interventions (MBIs). Furthermore, MBIs may improve doctors' performance (eg in empathy). However, there are no published systematic reviews that clarify the effects of MBIs on doctor well‐being or performance to inform future research and professional development programmes. We therefore systematically reviewed and narratively synthesised findings on the impacts of MBIs on doctors' well‐being and performance. Methods: We searched PubMed and PsycINFO from inception to 9 May 2018 and independently reviewed studies investigating the effects of MBIs on doctor well‐being or performance. We systematically extracted data and assessed study quality according to the Medical Education Research Study Quality Instrument (MERSQI), and narratively reported study findings. Results: We retrieved a total of 934 articles, of which 24 studies met our criteria; these included randomised, (un)controlled or qualitative studies of average quality. Effects varied across MBIs with different training contents or formats: MBIs including essential mindfulness training elements, or employing group‐based training, mostly showed positive effects on the well‐being or performance of doctors across different educational and hospital settings. Doctors perceived both benefits (enhanced self‐ and other‐understanding) and challenges (time limitations and feasibility) associated with MBIs. Findings were subject to the methodological limitations of studies (eg the use of self‐selected participants, lack of placebo interventions, use of self‐reported outcomes). Conclusions: This review indicates that doctors can perceive positive impacts of MBIs on their well‐being and performance. However, the evidence was subject to methodological limitations and does not yet support the standardisation of MBIs in professional development programmes. Rather, health care organisations could consider including group‐based MBIs as voluntary modules for doctors with specific well‐being needs or ambitions regarding professional development. Mindfulness is often promoted as a means to facilitate well‐being and performance. This review offers guidance regarding the essential interventional elements that determine perceptions of impact. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Patients 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.Methods: The 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.Results: Approximately 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.Conclusions: Dyadic 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. [ABSTRACT FROM AUTHOR]

Purpose: It is unclear whether life-expectancy estimates of patients with advanced cancer and their caregivers are associated with patient existential, social, or emotional quality of life (QOL) or caregiver emotional QOL. Methods: Patients with advanced cancer and their caregivers (n = 162 dyads) reported estimates of the chance the patient would live for 2 years or more from 0% (most pessimistic) to 100% (most optimistic). They also completed self-report measures of QOL. Results: Adjusting for sociodemographic confounds and multiple comparisons, more pessimistic caregiver and patient life-expectancy estimates were associated with worse caregiver emotional QOL and worse patient existential QOL. Discrepancies between patient and caregiver estimates were not associated with patient or caregiver QOL. Conclusions: Pessimistic life-expectancy estimates are associated with worse existential QOL in patients and worse emotional QOL in caregivers. Prospective research to establish causal relationships is needed, and interventions to address the relationship between beliefs about life expectancy and existential and emotional QOL should be considered. Providing these interventions to patients and caregivers receiving information on life expectancy may mitigate the negative impact of life-expectancy information on patient existential quality of life. [ABSTRACT FROM AUTHOR]

Context: Completion of advance directives (ADs) enhances the likelihood of receiving goal-concordant treatments near the end of life. Previous research on community samples have shown that completion of ADs is less common in lower socioeconomic status demographic group; there is a paucity of such research in patients with cancer. Objectives: To study the effect of income and education on the completion of ADs. Hypothesis: Patients with cancer having lower incomes and education levels would be less likely to report completing ADs. Methods: We conducted cross-sectional analyses of data provided by patients (n = 265) enrolled in the Values and Options in Cancer Care clinical trial. Patients with advanced cancer reported whether they had (1) completed a living will or (2) designated a health-care proxy. Response options for both questions were yes (scored 1), no (scored 0), and unsure (scored 0). We studied the association of lower household income (≤US$20 000) and education level (never attended college) with AD scores. Results: Patients with lower annual incomes had lower AD scores (estimate −0.44; confidence intervals [CI]: −0.71 to −0.16, P = .001); the association between higher educational attainment (some college or more) and completion of ADs was not statistically significant (estimate 0.04, CI: −0.16 to 0.24, P = .70). Conclusion: Interventions to promote completion of ADs among lower income patients with serious illnesses are needed. [ABSTRACT FROM AUTHOR]

Background: Pain management racial disparities exist, yet it is unclear whether disparities exist in pain management in advanced cancer.Objective: To examine the effect of race on physicians' pain assessment and treatment in advanced lung cancer and the moderating effect of patient activation.Design: Randomized 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.Participants: Ninety-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 Measures: Opioids prescribed (or not), total daily opioid doses (in oral morphine equivalents), guideline-concordant pain management, and pain assessment.Key Results: SPs 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).Conclusions: Neither 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 Registration: NCT01501006. [ABSTRACT FROM AUTHOR]