Alzheimer Disease Worries, Fears, and Stigma and Their Relationship to Genetic and Interventional Research Engagement.

BACKGROUND: Alzheimer disease (AD) research increasingly requires healthy individuals willing to undergo genetic testing. OBJECTIVE: This study seeks to: (1) describe older adults' beliefs about AD genetic testing, worry about AD, and fear of AD stigma, and (2) explore how these constructs relate to research participation. METHODS: Surveys were sent to participants active in AD-observational research and those that were not. Three measures of research participation were explored: (1) being a current research participant, (2) self-report of clinical trial participation, and (3) expressing genetic registry interest. RESULTS: The majority of the 502 respondents perceived greater benefit than the risk associated with AD genetic testing. AD worry and perceptions of AD stigma were low. Higher levels of AD worry and lower perceptions of AD stigma were associated with being a current AD research volunteer. AD worry and stigma were unrelated to clinical trial participation or genetic registry interest; these research participation measures were associated with AD genetic testing benefit. CONCLUSIONS: Beliefs about AD genetic testing, AD worry, and AD stigma are related to research participation, but relationships vary based on the research participation investigated. Future work should identify how these findings can inform outreach and recruitment efforts.

Contributors to Intensive Care Unit Clinicians' Predictions of Patient Outcomes: A Qualitative Analysis.

BACKGROUND: Information about a critically ill patient's prognosis is important to the shared decision-making process. The factors that physicians and nurses consider when generating their prognoses are not well understood. OBJECTIVE: To explore the factors that intensive care unit clinicians consider when prognosticating for their patients. METHODS: Intensive care unit clinicians (physicians and nurses) were asked to predict 6-month survival and describe the patient-related factors that they considered in their prognoses. The reported factors were tallied and compared with predictions of 6-month survival or death and with correct and incorrect predictions. RESULTS: Physicians and nurses completed 254 and 286 surveys, respectively, for 303 patients. Of 23 factors identified, the 3 most frequently reported were acute conditions, medical history and comorbid conditions, and trajectory. For patients predicted to be alive at 6 months, physicians commonly mentioned the factors procedures and age; nurses mentioned behavior patterns, previous experiences, and social support. For patients predicted to be dead at 6 months, both groups commonly mentioned cancer. Factors with the highest ratios of correct to incorrect predictions reported by physicians were procedures and definitive treatment; those reported by nurses were procedures, behavior patterns, and current functional status. CONCLUSIONS: Intensive care unit clinicians use various patient factors to inform their prognoses. Clinicians use different factors when predicting survival than when predicting death. Some factors are reported more frequently for correct predictions than for incorrect predictions.

Patients' perceptions and ICU clinicians predictions of quality of life following critical illness.

PURPOSE: To determine how patients perceive their quality of life (QOL) six months following critical illness and to measure clinicians' discriminative accuracy of predicting this outcome. MATERIALS AND METHODS: This prospective cohort study of intensive care unit (ICU) survivors asked patients to report their QOL strictly at six months compared to one month before their critical illness as better, the same, or worse. ICU physicians and nurses made six-month QOL predictions for these patients. RESULTS: Of 162 critical illness survivors, 33% (n = 53) of patients reported six-month QOL as better, 33% (n = 54) the same, and 34% (n = 55) worse. Abnormal cognition and inability to return to primary pastime or original place of residence (p < .05 for all) were associated with worse self-reported QOL at six months in multivariable regression. Predictions of patient perceptions of QOL at six months were pessimistic and had low discriminative accuracy for both physicians (sensitivity 56%, specificity 53%) and nurses (sensitivity 49%, specificity 57%). CONCLUSIONS: Among survivors of critical illness, one-third each reported their six-month post-ICU QOL as better, the same, or worse. Self-reported six-month QOL was associated with six-month function. ICU clinicians should use caution in predicting self-reported QOL, as discriminative accuracy was poor in this cohort.

Public Understanding and Opinions regarding Genetic Research on Alzheimer's Disease.

BACKGROUND: Participants willing to provide genetic samples are needed to propel research on Alzheimer's disease (AD) treatment and prevention forward. A limited public understanding of what AD genetic research entails and concerns about participation may constitute recruitment challenges. OBJECTIVES: This study seeks to understand how well older adults understand AD genetic research and whether their understanding is related to concerns about participation or willingness to engage. METHODS: Our surveys included a mock consent form with corresponding knowledge and opinion questions regarding AD. The surveys were mailed to participants from the University of Kentucky Alzheimer's Disease Center and to a list of randomly selected individuals within the same age range from a local voter registration list. Descriptive and multivariable linear regression analyses were conducted. RESULTS: The returned surveys (n = 502) demonstrated limits to what the respondents understood immediately after reading the relevant material, with a mean summary knowledge score of 74.5 out of 100. While comprehension gaps were not related to level of concern or willingness to engage, concerns were related to willingness to engage. Concerns were greater among individuals not actively involved in research, individuals from minority groups, and those with higher levels of education. CONCLUSIONS: Focusing on concerns specifically, rather than on knowledge more generally, may help increase participation.

Approximately One In Three US Adults Completes Any Type Of Advance Directive For End-Of-Life Care.

Efforts to promote the completion of advance directives implicitly assume that completion rates of these documents, which help ensure care consistent with people's preferences in the event of incapacity, are undesirably low. However, data regarding completion of advance directives in the United States are inconsistent and of variable quality. We systematically reviewed studies published in the period 2011-16 to determine the proportion of US adults with a completed living will, health care power of attorney, or both. Among the 795,909 people in the 150 studies we analyzed, 36.7 percent had completed an advance directive, including 29.3 percent with living wills. These proportions were similar across the years reviewed. Similar proportions of patients with chronic illnesses (38.2 percent) and healthy adults (32.7 percent) had completed advance directives. The findings provide benchmarks for gauging future policies and practices designed to motivate completion of advance directives, particularly among those people most likely to benefit from having these documents on record.

Six-Month Morbidity and Mortality among Intensive Care Unit Patients Receiving Life-Sustaining Therapy. A Prospective Cohort Study.

RATIONALE: Understanding long-term outcomes of critically ill patients may inform shared decision-making in the intensive care unit (ICU). OBJECTIVES: To quantify 6-month functional outcomes of general ICU patients, and develop a multivariable model comprising factors present during the first ICU day to predict which patients will return to their baseline function 6 months later. METHODS: We conducted a prospective cohort study in three medical ICUs and two surgical ICUs in three hospitals. We enrolled patients who spent at least 3 days in the ICU and received mechanical ventilation for more than 48 hours and/or vasoactive infusions for more than 24 hours. RESULTS: We measured 6-month outcomes including survival, return to original place of residence, and physical and cognitive function. Of 303 enrolled patients, 299 (98.7%) had complete follow-up at 6 months. Among the 169 patients (56.5%) who survived to 6 months, 82.8% returned home, 81.9% were able to toilet, 71.3% were able to ambulate 10 stairs, and 62.4% reported normal cognition. Overall, 31.1% of patients returned to their baseline status on these measures. Factors associated with not returning to baseline included higher APACHE III score, being a medical patient, older age, nonwhite race, recent hospitalization, prior transplantation, and a history of cancer or of neurologic or liver disease. A model including only these Day 1 factors had good discrimination (area under receiver operating characteristic curve, 0.778; 95% confidence interval, 0.724-0.832) and calibration (difference between observed and expected P value, 0.36). CONCLUSIONS: Among patients spending at least 3 days in an ICU and requiring even brief periods of life-sustaining therapy, nearly one-half will be dead and less than one-third will have returned to their baseline status at 6 months. Of those who survive, the majority of patients will be back at home at 6 months. Future research is needed to validate this multivariable model, including readily available patient characteristics available on the first ICU day, that seems to identify patients who will return to baseline at 6 months.

Discriminative Accuracy of Physician and Nurse Predictions for Survival and Functional Outcomes 6 Months After an ICU Admission.

IMPORTANCE: Predictions of long-term survival and functional outcomes influence decision making for critically ill patients, yet little is known regarding their accuracy. OBJECTIVE: To determine the discriminative accuracy of intensive care unit (ICU) physicians and nurses in predicting 6-month patient mortality and morbidity, including ambulation, toileting, and cognition. DESIGN, SETTING, AND PARTICIPANTS: Prospective cohort study conducted in 5 ICUs in 3 hospitals in Philadelphia, Pennsylvania, and enrolling patients who spent at least 3 days in the ICU from October 2013 until May 2014 and required mechanical ventilation, vasopressors, or both. These patients' attending physicians and bedside nurses were also enrolled. Follow-up was completed in December 2014. MAIN OUTCOMES AND MEASURES: ICU physicians' and nurses' binary predictions of in-hospital mortality and 6-month outcomes, including mortality, return to original residence, ability to toilet independently, ability to ambulate up 10 stairs independently, and ability to remember most things, think clearly, and solve day-to-day problems (ie, normal cognition). For each outcome, physicians and nurses provided a dichotomous prediction and rated their confidence in that prediction on a 5-point Likert scale. Outcomes were assessed via interviews with surviving patients or their surrogates at 6 months. Discriminative accuracy was measured using positive and negative likelihood ratios (LRs), C statistics, and other operating characteristics. RESULTS: Among 340 patients approached, 303 (89%) consented (median age, 62 years [interquartile range, 53-71]; 57% men; 32% African American); 6-month follow-up was completed for 299 (99%), of whom 169 (57%) were alive. Predictions were made by 47 physicians and 128 nurses. Physicians most accurately predicted 6-month mortality (positive LR, 5.91 [95% CI, 3.74-9.32]; negative LR, 0.41 [95% CI, 0.33-0.52]; C statistic, 0.76 [95% CI, 0.72-0.81]) and least accurately predicted cognition (positive LR, 2.36 [95% CI, 1.36-4.12]; negative LR, 0.75 [95% CI, 0.61-0.92]; C statistic, 0.61 [95% CI, 0.54-0.68]). Nurses most accurately predicted in-hospital mortality (positive LR, 4.71 [95% CI, 2.94-7.56]; negative LR, 0.61 [95% CI, 0.49-0.75]; C statistic, 0.68 [95% CI, 0.62-0.74]) and least accurately predicted cognition (positive LR, 1.50 [95% CI, 0.86-2.60]; negative LR, 0.88 [95% CI, 0.73-1.06]; C statistic, 0.55 [95% CI, 0.48-0.62]). Discriminative accuracy was higher when physicians and nurses were confident about their predictions (eg, for physicians' confident predictions of 6-month mortality: positive LR, 33.00 [95% CI, 8.34-130.63]; negative LR, 0.18 [95% CI, 0.09-0.35]; C statistic, 0.90 [95% CI, 0.84-0.96]). Compared with a predictive model including objective clinical variables, a model that also included physician and nurse predictions had significantly higher discriminative accuracy for in-hospital mortality, 6-month mortality, and return to original residence (P < .01 for all). CONCLUSIONS AND RELEVANCE: ICU physicians' and nurses' discriminative accuracy in predicting 6-month outcomes of critically ill patients varied depending on the outcome being predicted and confidence of the predictors. Further research is needed to better understand how clinicians derive prognostic estimates of long-term outcomes.

Defining the Medical Intensive Care Unit in the Words of Patients and Their Family Members: A Freelisting Analysis.

BACKGROUND: No validated conceptual framework exists for understanding the outcomes of patient- and family-centered care in critical care. OBJECTIVE: To explore the meaning of intensive care unit among patients and their families by using freelisting. METHODS: The phrase intensive care unit was used to prompt freelisting among intensive care unit patients and patients' family members. Freelisting is an anthropological technique in which individuals define a domain by listing all words that come to mind in response to a topic. Salience scores, derived from the frequency with which a word was mentioned, the order in which it was mentioned, and the length of each list, were calculated and analyzed. RESULTS: Among the 45 participants, many words were salient to both patients and patients' family members. Words salient solely for patients included consciousness, getting better, noisy, and personal care. Words salient solely for family members included sadness, busy, professional, and hope. The words suffering, busy, and team were salient solely for family members of patients who lived, whereas sadness, professionals, and hope were salient solely for family members of patients who died. The words caring and death were salient for both groups. CONCLUSIONS: Intensive care unit patients and their families define intensive care unit by using words to describe sickness, caring, medical staff, emotional states, and physical qualities of the unit. The results validate the importance of these topics among patients and their families in the intensive care unit and illustrate the usefulness of freelisting in critical care research.

Stability of end-of-life preferences: a systematic review of the evidence.

IMPORTANCE: Policies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status. OBJECTIVE: To systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status. EVIDENCE REVIEW: We searched for longitudinal studies of patients' preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded. FINDINGS: A total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 70% of patients' preferences for EOL care were stable over time. Preference stability was generally greater among inpatients and seriously ill outpatients than among older adults without serious illnesses (P < .002). Patients with higher education and who had engaged in advance care planning had greater preference stability, and preferences to forgo therapies were generally more stable than preferences to receive therapies. Among 9 of the 24 studies (38%) assessing changes in health status, no consistent relationship with preference changes was identified. CONCLUSIONS AND RELEVANCE: Considerable variability among studies in the methods of preference assessment, the time between assessments, and the definitions of stability preclude meta-analytic estimates of the stability of patients' preferences and the factors influencing these preferences. Although more seriously ill patients and those who engage in advance care planning most commonly have stable preferences for future treatments, further research in real-world settings is needed to confirm the utility of advance care plans for future decision making.