Racial Disparity in Outcomes Among Prostate Cancer Patients in the Post-Affordable Care Act Period.

INTRODUCTION: Our objective was to assess whether Medicaid expansion is associated with reduced racial disparity in quality of care measured as 30-day mortality, 90-day mortality, and 30-day readmission in prostate cancer patients receiving surgery. METHODS: We used the National Cancer Database to extract a cohort of African American and White men diagnosed with prostate cancer between 2004 and 2015 and surgically treated. We used 2004-2009 data to observe preexisting racial disparity in outcomes. We used 2010-2015 data to assess racial disparity in outcomes and the interaction of race and Medicaid expansion status. RESULTS: Between 2004 and 2009, 179,762 men met our criteria. In this period, African American patients reported higher hazard of 30- and 90-day mortality and higher odds of 30-day readmission compared to White patients. Between 2010 and 2015, 174,985 men met our criteria. Of these 84% were White and 16% were African American. Main effects models showed that compared to White men, African American men had higher odds of 30-day mortality (OR=1.96, 95% CI = 1.46, 2.67), 90-day mortality (OR=1.40, 95% CI = 1.11, 1.77), and 30-day readmission (OR=1.28, 95% CI = 1.19, 1.38).The interactions between race and Medicaid expansion were not significant (P = .1306, .9499, and .5080, respectively). CONCLUSIONS: Improved access to care via Medicaid expansion may not translate into reduced racial disparity in quality-of-care outcomes in prostate cancer patients treated surgically. System-level factors such as availability of and referrals to care, and complex socioeconomic structure may also play a role in improving quality of care and reducing disparities.

Trajectory of Depression among Prostate Cancer Patients: A Secondary Analysis of a Randomized Controlled Trial.

Background: While psychological difficulties, such as depression, among prostate cancer patients are known, their longitudinal burden remains understudied. We assessed the burden of depression across low-, intermediate- and high-risk prostate cancer groups, and the association between regret and long-term depression. Methods: Secondary analysis of data from a multi-centered randomized controlled study among localized prostate cancer patients was carried out. Assessments were performed at baseline, and at 3-, 6-, 12- and 24-month follow-up. Depression was assessed using the Center for Epidemiologic Studies Depression (CES-D) scale. A CES-D score ≥ 16 indicates high depression. Regret was measured using the regret scale of the Memorial Anxiety Scale for Prostate Cancer (MAX-PC). The proportion of patients with high depression was compared over time, for each risk category. Logistic regression was used to assess the association between regret, and long-term depression after adjusting for age, race, insurance, smoking status, marital status, income, education, employment, treatment, number of people in the household and study site. Results: The study had 743 localized prostate cancer patients. Median depression scores at 6, 12 and 24 months were significantly larger than the baseline median score, overall and for the three prostate cancer risk groups. The proportion of participants with high depression increased over time for all risk groups. Higher regret at 24-month follow-up was significantly associated with high depression at 24-month follow-up, after adjusting for covariates. Conclusions: A substantial proportion of localized prostate cancer patients continued to experience long-term depression. Patient-centered survivorship care strategies can help reduce depression and regret, and improve outcomes in prostate cancer care.

Continuity of care and advanced prostate cancer.

BACKGROUND: Continuity of care is an important element of advanced prostate cancer care due to the availability of multiple treatment options, and associated toxicity. However, the association between continuity of care and outcomes across different racial groups remains unclear. OBJECTIVE: To assess the association of provider continuity of care with outcomes among Medicare fee-for-service beneficiaries with advanced prostate cancer and its variation by race. DESIGN: Retrospective cohort study using Surveillance, Epidemiology, and End Results (SEER)-Medicare data. SUBJECTS: African American and white Medicare beneficiaries aged 66 or older, and diagnosed with advanced prostate cancer between 2000 and 2011. At least 5 years of follow-up data for the cohort was used. MEASURES: Short-term outcomes were emergency room (ER) visits, hospitalizations, and cost during acute survivorship phase (2-year post-diagnosis), and mortality (all-cause and prostate cancer-specific) during the follow-up period. We calculated continuity of care using Continuity of Care Index (COCI) and Usual Provider Care Index (UPCI), for all visits, oncology visits, and primary care visits in acute survivorship phase. We used Poisson models for ER visits and hospitalizations, and log-link GLM for cost. Cox model and Fine-Gray competing risk models were used for survival analysis, weighted by propensity score. We performed similar analysis for continuity of care in the 2-year period following acute survivorship phase. RESULTS: One unit increase in COCI was associated with reduction in short-term ER visits (incidence rate ratio [IRR] = 0.65, 95% confidence interval [CI] 0.64, 0.67), hospitalizations (IRR = 0.65, 95% CI 0.64, 0.67), and cost (0.64, 95% CI 0.61, 0.66) and lower hazard of long-term mortality. Magnitude of these associations differed between African American and white patients. We observed comparable results for continuity of care in the follow-up period. CONCLUSIONS: Continuity of care was associated with improved outcomes. The benefits of higher continuity of care were greater for African Americans, compared to white patients. Advanced prostate cancer survivorship care must integrate appropriate strategies to promote continuity of care.

"It All Depends": Patient and Decision Partner Experiences in Cancer Clinical Trial Decision-Making.

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.

Diagnoses and Treatment After Depression Screening in Primary Care Among Youth.

INTRODUCTION: Depression screening is universally recommended for adolescents presenting in primary care settings in the U.S. However, little is known about how depression screening affects the likelihood of being diagnosed with a mental disorder or accessing mental health care over time. METHODS: This longitudinal cohort study used insurance claims data from adolescents who attended a well-visit between 2014 and 2017. Propensity score matching was used to compare adolescents who were screened for depression with similar unscreened adolescents. Diagnoses and treatment uptake were examined over a 6-month follow-up and included depression diagnoses, mood-related diagnoses, antidepressant medications, any mental health medication, and psychotherapy. Heterogeneity of associations by sex was also examined. Analyses were conducted from December 2020 to June 2021. RESULTS: The sample included 57,732 adolescents (mean age, 14.26 years; 48.9% female). Compared with adolescents who were not screened for depression, adolescents screened for depression were 30% more likely to be diagnosed with depression (risk ratio=1.30, 95% CI=1.11, 1.52) and 17% more likely to receive a mood-related diagnosis (risk ratio=1.17, 95% CI=1.08, 1.27) but were not more likely to be treated with an antidepressant medication (risk ratio=1.11, 95% CI=0.82, 1.51), any mental health medication (risk ratio=1.15, 95% CI=0.87, 1.53), or psychotherapy (risk ratio=1.13, 95% CI=0.98, 1.31). Associations were generally stronger among female adolescents. CONCLUSIONS: Adolescents who were screened for depression during a well-visit were more likely to receive a diagnosis of depression or a mood-related disorder in the 6 months after screening. Future research should explore methods for increasing treatment uptake after screening.

The Role of Sources and Types of Health Information in Shaping Health Literacy in Cervical Cancer Screening Among African Immigrant Women: A Mixed-Methods Study.

BACKGROUND: Health literacy is a strong determinant of health outcomes among immigrants. How sources and types of health information influence health literacy in the context of cervical cancer screening among African immigrant women remains unknown. OBJECTIVE: This study was undertaken to explore how various sources and types of health information influence information sharing and health literacy in the context of cervical cancer screening among African immigrant women. METHODS: Using a mixed-methods approach, a convenience sample of African immigrant women (N = 167) completed study surveys followed by semi-structured individual phone interviews with a purposive sub-sample (n = 20) of survey participants. The relationship between sources and types of health information and health literacy was assessed using multivariate logistic regression. Emergent themes were identified in the qualitative interviews using content analysis. Qualitative and quantitative data were merged to describe differences and similarities in African immigrant women's experiences and display of health literacy by different sources and types of health information. KEY RESULTS: Health care providers (78%), women friends (46%), and internet (45%) were the most common sources of health information used by African immigrant women, followed by women relatives (32%), television (22%), social media (17%), and church (16%). Content analysis revealed that the health care provider was rated as the most credible source; personal experiences of family and friends made health information more relatable; and church was the least endorsed source. Health information presented verbally (adjusted odds ratio of 5.51, p = .01) was associated with higher health literacy even after controlling for covariates. Most African immigrant women had health information presented in verbal form (80%), with pictures (43%) being the least popular type of health information. CONCLUSIONS: Study findings suggest that verbal communication is associated with health literacy in the context of cervical cancer screening among African immigrant women. Health interventions that use peer educators (women friends and family) and incorporate verbal communication may be a more effective strategy in promoting positive cervical cancer health behaviors among African immigrant women. [HLRP: Health Literacy Research and Practice. 2021;5(2):e96-e108.] Plain Language Summary: For this mixed-methods study, a convenience sample of African immigrant women (N = 167) completed study surveys followed by semi-structured individual phone interviews with a purposive sub-sample (n = 20) of the survey participants. Study findings show a strong association between verbal communication and health literacy in the context of cervical cancer screening among African immigrant women.

Long-term depression incidence and associated mortality among African American and White prostate cancer survivors.

BACKGROUND: Depression is common after a diagnosis of prostate cancer and may contribute to poor outcomes, particularly among African Americans. The authors assessed the incidence and management of depression and its impact on overall mortality among African American and White veterans with localized prostate cancer. METHODS: The authors used the Veterans Health Administration Corporate Data Warehouse to identify 40,412 African American and non-Hispanic White men diagnosed with localized prostate cancer from 2001 to 2013. Patients were followed through 2019. Multivariable logistic regression was used to measure associations between race and incident depression, which were ascertained from administrative and depression screening data. Cox proportional hazards models were used to measure associations between incident depression and all-cause mortality, with race-by-depression interactions used to assess disparities. RESULTS: Overall, 10,013 veterans (24.5%) were diagnosed with depression after a diagnosis of prostate cancer. Incident depression was associated with higher all-cause mortality (adjusted hazard ratio [aHR], 1.27; 95% confidence interval [CI], 1.23-1.32). African American veterans were more likely than White veterans to be diagnosed with depression (29.3% vs 23.2%; adjusted odds ratio [aOR], 1.15; 95% CI, 1.09-1.21). Among those with depression, African Americans were less likely to be prescribed an antidepressant (30.4% vs 31.7%; aOR, 0.85; 95% CI, 0.77-0.93). The hazard of all-cause mortality associated with depression was greater for African American veterans than White veterans (aHR, 1.32 [95% CI, 1.26-1.38] vs 1.15 [95% CI, 1.07-1.24]; race-by-depression interaction P < .001). CONCLUSIONS: Incident depression is common among prostate cancer survivors and is associated with higher mortality, particularly among African American men. Patient-centered strategies to manage incident depression may be critical to reducing disparities in prostate cancer outcomes.

Exploring Health Literacy and the Correlates of Pap Testing Among African Immigrant Women: Findings from the AfroPap Study.

African immigrant (AI) women have low rates of Pap testing. Health literacy plays a pivotal role in health behaviors. Sources and types of health information could shape health literacy and inform the Pap testing behaviors of AI women. However, the influences of health literacy, sources, and types of health information along with cultural and psychosocial correlates on the Pap testing behaviors of AI women are poorly understood. To examine how sources and types of health information impact health literacy, and in turn, how health literacy and cultural and psychosocial factors influence the Pap testing behaviors of AI women. An adapted Health Literacy Skills Framework guided the selection of variables for this cross-sectional study. Convenience sampling was used to recruit 167 AI women, 21-65 years. Multivariate logistic regression was used to assess correlates of Pap testing after adjusting for covariates (age, education, English proficiency, employment, income, health insurance, access to primary care, marital status, and healthcare provider recommendation). Most participants (71%) had received a Pap test in the past and used multiple (two or more) sources (65%) and types (57%) of health information. Using multiple sources of health information (aOR 0.11, p < 0.01) but not types of health information was associated with Pap testing. Having negative cultural beliefs (aOR 0.17, p = 0.01) and having high self-efficacy (aOR 9.38, p < 0.01) were significantly associated with Pap testing after adjusting for covariates. High health literacy (OR 3.23, p < 0.05) and high decisional balance (OR 5.28, p < 0.001) were associated with Pap testing in bivariate models but did not remain significant after controlling for covariates. Cultural beliefs was a significant correlate of AI women's Pap testing behaviors regardless of other known social determinants of health (education, English proficiency, age, access to primary care). Disseminating health information through various sources has the potential to promote Pap testing among AI women. Larger studies which utilize a robust sampling strategy and include a diverse group of AI women are needed in order to optimize health interventions aimed at improving Pap test screening behaviors among AI women.

Sources of Information for Learning and Decision-Making in Men With Localized Prostate Cancer.

Information seeking is essential for effective patient-centered decision-making. However, prostate cancer patients report a gap between information needed and information received. The importance of different information sources for treatment decision remains unclear. Thus, using the Comprehensive Model of Health Information (CMIS) framework, we assessed the antecedent factors, information carrier factors, and information-seeking activities in localized prostate cancer patients. Data were collected via semistructured one-on-one, interviews and structured survey. Men with localized prostate cancer were recruited from two urban health-care centers. Following the interview, participants completed a survey about sources that were helpful in learning about prostate cancer treatment and decision-making. The interviews were audio-recorded, transcribed, and subjected to a thematic analysis using NVivo 10. Fifty localized prostate cancer survivors completed the interviews and surveys. Important antecedent factors that were observed were age, marital status, uncertainty, anxiety, caregiver burden, and out-of-pocket expenses. We identified complexity, magnitude, and reliability as information carrier characteristics. Preferred sources for information were health providers, medical websites, and pamphlets from the doctor's office. These sources were also perceived as most helpful for decision-making. Urologists, urological oncologists, and radiation/radiation oncologists were important sources of information and helpful in decision-making. Prostate cancer patients obtained information from multiple sources. Most prostate cancer patients make patient-centered choices by incorporating personal factors and medical information. By considering factors that influence patients' treatment decisions, health-care providers can enhance the patient-centeredness of care. Multiple strategies and interventions are necessary for disseminating valid, reliable, and unbiased information to prostate cancer patients to facilitate informed decisions.

Mood disorders, childhood maltreatment, and medical morbidity in US adults: An observational study.

OBJECTIVE: Mood disorders, child maltreatment, and medical morbidity are associated with enormous public health burden and individual suffering. The effect of mood disorders on medical morbidity, accounting for child maltreatment, has not been studied prospectively in a large, representative sample of community-dwelling US adults. This study tested the effects of mood disorders and child maltreatment on medical morbidity, and variation by subtypes. METHODS: Participants were noninstitutionalized US adults in the National Epidemiologic Survey on Alcohol and Related Conditions (N = 43,093 wave 1, N = 34,653 wave 2). Mood disorders included lifetime DSM-IV episodes of depression, dysthymia, mania, or hypomania. Child maltreatment was defined as sexual, physical, or emotional abuse, or physical or emotional neglect before age 18. Survey-weighted zero-inflated poisson regression was used to study effects on medical morbidity, a summary score of 11 self-reported medical conditions. Results were adjusted for age, sex, ethnicity/race, income, substance use disorders, smoking, and obesity. RESULTS: Mood disorders and child maltreatment additively associated with medical morbidity at study entry and three years later, with similar magnitude as obesity and smoking. Mania/hypomania (incidence rate ratio [IRR] 1.06, 95% CI 1.01-1.10) and child sexual (IRR 1.08, 95% CI 1.04-1.11) and emotional (IRR 1.05, 95% CI 1.01-1.10) abuse were associated with higher medical morbidity longitudinally. CONCLUSIONS: Child maltreatment is common, and its long-range negative effect on medical morbidity underscores the importance of trauma-informed care, and consideration of early life exposures. History of mania/hypomania should be considered in medical practice, and physical health must be emphasized in mental health care.

What matters when doctors die: A qualitative study of family perspectives.

BACKGROUND: The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient's condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life. OBJECTIVES: The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life. DESIGN: Cross-sectional qualitative design. PARTICIPANTS: We conducted interviews with family members of deceased physicians. APPROACH: We analyzed the data using the constant comparison method to identify themes. KEY RESULTS: Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians' families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient's control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system. CONCLUSIONS: Even when disease and prognosis are well understood as in this group of physicians, families still experienced difficulties in end-of-life decision making. These findings highlight the need to specifically address preferences for caregiver, care setting and symptom management in shared end-of-life decision making conversations with patients and families.

Patient-Centered Approach to Develop the Patient's Preferences for Prostate Cancer Care (PreProCare) Tool.

Objectives. To describe the development of our Patient Preferences for Prostate Cancer Care (PreProCare) tool to aid patient-centered treatment decision among localized prostate cancer patients. Methods. We incorporated patient and provider experiences to develop a patient preference elicitation tool using adaptive conjoint analysis. Our patient-centered approach used systematic literature review, semistructured patient interviews, and provider focus groups to determine the treatment attributes most important for decision making. The resulting computer-based PreProCare tool was pilot tested in a clinical setting. Results. A systematic review of 56 articles published between 1995 and 2015 yielded survival, cancer recurrence, side effects, and complications as attributes of treatment options. We conducted one-on-one interviews with 50 prostate cancer survivors and 5 focus groups of providers. Patients reported anxiety, depression, treatment specifics, and caregiver burden as important for decision making. Providers identified clinical characteristics as important attribute. Input from stakeholders' advisory group, physicians, and researchers helped finalize 15 attributes for our PreProCare preference assessment tool. Conclusion. The PreProCare tool was developed using a patient-centered approach and may be a feasible and acceptable preference clarification intervention for localized prostate cancer patients. The PreProCare tool may translate into higher participant engagement and self-efficacy, consistent with patients' personal values.

Patient-Centered Preference Assessment to Improve Satisfaction With Care Among Patients With Localized Prostate Cancer: A Randomized Controlled Trial.

PURPOSE: To study the effectiveness of the Patient Preferences for Prostate Cancer Care (PreProCare) intervention in improving the primary outcome of satisfaction with care and secondary outcomes of satisfaction with decision, decision regret, and treatment choice among patients with localized prostate cancer. METHODS: In this multicenter randomized controlled study, we randomly assigned patients with localized prostate cancer to the PreProCare intervention or usual care. Outcomes were satisfaction with care, satisfaction with decision, decision regret, and treatment choice. Assessments were performed at baseline and at 3, 6, 12, and 24 months, and were analyzed using repeated measures. We compared treatment choice across intervention groups by prostate cancer risk categories. RESULTS: Between January 2014 and March 2015, 743 patients with localized prostate cancer were recruited and randomly assigned to receive PreProCare (n = 372) or usual care (n = 371). For the general satisfaction subscale, improvement at 24 months from baseline was significantly different between groups (P < .001). For the intervention group, mean scores at 24 months improved by 0.44 (SE, 0.06; P < .001) from baseline. This improvement was 0.5 standard deviation, which was clinically significant. The proportion reporting satisfaction with decision and no regret increased over time and was higher for the intervention group, compared with the usual care group at 24 months (P < .05). Among low-risk patients, a higher proportion of the intervention group was receiving active surveillance, compared with the usual care group (P < .001). CONCLUSION: Our patient-centered PreProCare intervention improved satisfaction with care, satisfaction with decision, reduced regrets, and aligned treatment choice with risk category. The majority of our participants had a high income, with implications for generalizability. Additional studies can evaluate the effectiveness of PreProCare as a mechanism for improving clinical and patient-reported outcomes in different settings.

Hearing Norton Sound: a community randomised trial protocol to address childhood hearing loss in rural Alaska.

INTRODUCTION: The population in rural Alaska experiences a disproprionately high burden of infection-mediated hearing loss. While the state mandates school hearing screening, many children with hearing loss are not identified or are lost to follow-up before ever receiving treatment. A robust, tribally owned healthcare system exists in Alaska, but children with hearing loss must first be identified and referred for existing infrastructure to be used. This trial will evaluate a new school hearing screening and referral process in rural Alaska, with the goal of improving timely identification and treatment of childhood hearing loss. METHODS AND ANALYSIS: Comparative effectiveness community randomised trial testing digital innovations to improve school hearing screening and referral in 15 communities in the Norton Sound region of northwest Alaska, with data collection from October 2017 to February 2020. All children (K-12) attending school in Bering Strait School District with parental informed consent and child assent will be eligible (target recruitment n=1500). Participating children will undergo both the current school hearing screen and new mobile health (mHealth) screen, with screening test validity evaluated against an audiometric assessment. Communities will be cluster randomised to continue the current primary care referral process or receive telemedicine referral for follow-up diagnosis and treatment. The primary outcome will be time to International Statistical Classification of Diseases, 10th Revision, ear/hearing diagnosis from screening date, measured in days. Secondary outcomes will include: sensitivity and specificity of current school and mHealth screening protocols measured against a benchmark audiometric assessment (air and bone conduction audiometry, tympanometry and digital otoscopy); hearing loss prevalence; hearing-related quality of life; and school performance (AIMSweb). Intention-to-treat analysis will be used. ETHICS AND DISSEMINATION: This study has been approved by the Institutional Review Boards of Alaska Area, Norton Sound and Duke University and is registered on clinicaltrials.gov. Results will be distributed with equal emphasis on scientific and community dissemination. TRIAL REGISTRATION NUMBER: NCT03309553; Pre-results.

Association between allostatic load and health behaviours: a latent class approach.

BACKGROUND: Allostatic load (AL) has been characterised in many ways throughout the literature; however, its relationship to health behaviours has only been studied in limited populations. We aimed to uncover qualitative patterns of biological indicators in AL and determine if those patterns were associated with certain health behaviours. METHODS: We conducted latent class analysis using biological indicators from a multiethnic population. We fit latent class regression of class on health behaviours (smoking, poor diet, physical activity and alcohol use) to measure the association between each latent class of AL and each health behaviour. RESULTS: Four classes, 'Metabolic+Cholesterol, 'Blood Pressure', 'Metabolic+Blood Pressure' and 'Low', were found in the sample. Latent class regression showed that physical activity and alcohol use were significantly associated with the 'Metabolic+Blood Pressure' class. CONCLUSION: Less physical activity was required to improve AL than was previously found. Low to moderate alcohol use was beneficial for lower AL. Implications of the amount of physical activity necessary to lower AL is discussed.

Hearing Norton Sound: mixed methods protocol of a community randomised trial to address childhood hearing loss in rural Alaska.

INTRODUCTION: Childhood hearing loss has implications for school achievement, economic outcomes and quality of life. This study will engage rural Alaska communities in research to improve the school hearing screening and referral process, partnering with stakeholders to develop a locally derived, evidence-based solution to improve timely identification and treatment of childhood hearing loss. METHODS AND ANALYSIS: Mixed methods community randomised trial in 15 communities in the Norton Sound region of northwest Alaska. Data collection will span from April 2017 until February 2020. Qualitative and mixed methods components are described in this protocol and the community randomised trial in the companion protocol. Focus groups and community events will be held leading up to the randomised trial to obtain community perspectives on childhood hearing loss in Alaska and elicit community input during trial protocol refinement (exploratory sequential stage). Stakeholder groups, including parents, children, teachers, school administrators and community health aides, will participate, along with community leaders, tribal leaders and community members. The randomised trial will be combined with qualitative, semi-structured interviews to elicit stakeholder perspectives on the intervention (explanatory sequential stage). The five stakeholder groups described above will participate in interviews. The study will conclude with additional focus groups and community events to discuss results and provide community insight for future implementation. Concluding focus groups will include policymakers, healthcare administrators, and tribal and community leaders in addition to the stakeholder groups. Informed consent and child assent will be required. Recordings will be transcribed and deidentified, with only stakeholder group recorded. Analyses will include categorical coding as well as narrative and thematic analysis. ETHICS AND DISSEMINATION: The Hearing Norton Sound study has been approved by the Institutional Review Boards of Alaska Area, Norton Sound, and Duke University, with trial registration on clinicaltrials.gov. Study results will be distributed with equal emphasis on scientific and community dissemination. TRIAL REGISTRATION NUMBER: NCT03309553; Results.

Advance Directives, Medical Conditions, and Preferences for End-of-Life Care Among Physicians: 12-year Follow-Up of the Johns Hopkins Precursors Study.

CONTEXT: Stability of preferences for life-sustaining treatment may vary depending on personal characteristics. OBJECTIVE: We estimated the stability of preferences for end-of-life treatment over 12 years and whether advance directives and medical conditions were associated with change in preferences for end-of-life treatment. DESIGN: Mailed survey of older physicians. METHODS: Longitudinal cohort study of medical students in the graduating classes from 1948 to 1964 at Johns Hopkins University. Eight hundred ninety eight physicians who completed the life-sustaining treatment questionnaire anytime in 1999, 2002, 2005, and 2011 (mean age 68.2 years at baseline). Preferences for life-sustaining treatment were assessed using a checklist questionnaire in response to a standard "brain injury" scenario and considered as a package using the latent class transition model. RESULTS: End-of-life preferences grouped into three classes: most aggressive (wanting most interventions; 14% of physicians), least aggressive (declining most interventions; 61%), and an intermediate class (declining most interventions except intravenous fluids and antibiotics; 25%). Physicians without an advance directive were more likely to desire more treatment and were less likely to transition out the most aggressive class. Transition probabilities from class to class did not vary over time. Persons with cancer expressed preference for the least aggressive treatment, whereas persons with cardiovascular disease and depression had preferences for more aggressive treatment. CONCLUSION: Transitions in end-of-life preferences and the factors influencing change and stability suggest that periodic reassessment for planning end-of-life care is needed.

Patient-centred outcomes research: perspectives of patient stakeholders.

OBJECTIVE: To elicit patient stakeholders' experience and perspectives about patient-centred care. DESIGN: Qualitative. SETTING: A large urban healthcare system. PARTICIPANTS: Four patient stakeholders who are prostate cancer survivors. MAIN OUTCOME MEASURES: Experience and perspectives of patient stakeholders regarding patient-centred care and treatment decisions. RESULTS: Our patient stakeholders represented a diverse socio-demographic group. The patient stakeholders identified engagement and dialogue with physicians as crucial elements of patient-centred care model. The degree of patient-centred care was observed to be dependent on the situations. High severity conditions warranted a higher level of patient involvement, compared to mild conditions. They agreed that patient-centred care should not mean that patients can demand inappropriate treatments. CONCLUSIONS: An important attribute of patient-centred outcomes research model is the involvement of stakeholders. However, we have limited knowledge about the experience of patient stakeholders in patient-centred outcomes research. Our study indicates that patient stakeholders offer a unique perspective as researchers and policy-makers aim to precisely define patient-centred research and care.