Impact of a machine learning algorithm on time to palliative care in a primary care population: protocol for a stepped-wedge pragmatic randomized trial.

BACKGROUND: As primary care populations age, timely identification of palliative care need is becoming increasingly relevant. Previous studies have targeted particular patient populations with life-limiting disease, but few have focused on patients in a primary care setting. Toward this end, we propose a stepped-wedge pragmatic randomized trial whereby a machine learning algorithm identifies patients empaneled to primary care units at Mayo Clinic (Rochester, Minnesota, United States) with high likelihood of palliative care need. METHODS: 42 care team units in 9 clusters were randomized to 7 wedges, each lasting 42 days. For care teams in treatment wedges, palliative care specialists review identified patients, making recommendations to primary care providers when appropriate. Care teams in control wedges receive palliative care under the standard of care. DISCUSSION: This pragmatic trial therefore integrates machine learning into clinical decision making, instead of simply reporting theoretical predictive performance. Such integration has the possibility to decrease time to palliative care, improving patient quality of life and symptom burden. TRIAL REGISTRATION: Clinicaltrials.gov NCT04604457 , restrospectively registered 10/26/2020. PROTOCOL: v0.5, dated 9/23/2020.

Palliative care: An update for internists.

All clinicians should maintain basic skills in general palliative care to help address the needs of patients and families. Because keeping up with the information provided by the growing palliative care literature can be challenging, we conducted a detailed search via Medline for palliative care articles published in 2020 in top peer-reviewed medical journals. Using a consensus-driven process of selection, we reviewed and summarized 11 articles to enhance knowledge of the practice-changing palliative care literature for general internists.

Down Syndrome Cures: Perspectives of People With Down Syndrome and Their Parents.

Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35/171 (20.5%) self-advocates and 430/867 (49.6%) parents showed the majority of self-advocates were glad they have DS (27/35; 77.1%) and liked who they are (33/35; 94.3%), but did want to learn faster (23/35; 65.7%). Parents much more commonly agreed with a willingness to give medications to prevent Alzheimer's disease (427/429; 99.5%) or blood cancer (428/430; 99.5%) as compared with a medicine to cure DS (225/425; 52.9%). Qualitative comments intertwined DS with identity, yet indicated desire for improved quality of life and opportunities. Responses decoupled DS itself from the complications of DS, with treatment of complications being more acceptable.

Provider perspectives on integrating family caregivers into patient care encounters.

OBJECTIVE: To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty. DATA SOURCES/SETTING: Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona. STUDY DESIGN: This was a qualitative study using data collected from one-on-one, semi-structured interviews with physicians. DATA COLLECTION: By using purposeful "maximum variation" sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach. PRIMARY FINDINGS: Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available. CONCLUSIONS: Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

Impact of Massage Therapy on the Quality of Life of Hospice Patients and Their Caregivers: A Pilot Study.

Evidence for massage therapy (MT) in hospice patients remains limited. We conducted a prospective pilot study on MTs impact on quality of life of hospice patients and caregivers. Patient-caregiver dyads were enrolled if patients scored ≥5 on pain, depression, anxiety, or well-being using the revised Edmonton Symptom Assessment System Revised (ESAS-r). The patient received MT weekly for up to 3 massages with assessments completed at baseline, after each massage, and 1 week after the final massage for patients and at baseline and 1 week after final massage for caregivers. A satisfaction survey was completed at study completion. A pro-rated area under the curve (AUC) was utilized to assess the primary endpoints of change in ESAS-r for patient ratings of pain, depression and anxiety as well as the Linear Analogue Self-Assessment (LASA). Median difference scores (end of study value)-(baseline value) for each participant and caregiver were calculated. Of 27 patients and caregivers enrolled, 25 patients received MT. Fifteen patients completed all 3 MT sessions and were given the final symptom assessment and satisfaction survey and their caregivers completed final assessments. The proportion of patients considered success (AUC > baseline) in the primary endpoints were the following: pain 40.9%, depression 40.9%, anxiety 54.5%, LASA 54.5%. Median difference scores were largely zero indicating no significant temporal change in symptoms. Patients were highly satisfied with MT. This pilot study indicated that MT was a feasible and well-received intervention in our population of patients with inadequately controlled symptoms.

Follow-up Care for Breast Cancer Survivors.

Breast cancer survivorship guidelines recommend at least annual follow-up visits, yet the degree to which this occurs in clinical practice is uncertain. Claims data from a US commercial insurance database (OptumLabs) were used to identify women treated with curative intent surgery for newly diagnosed breast cancer between 2006 and 2014. In 25 035 women, median follow-up was 3 years. In the second year after surgery, 9.6% of the patients did not visit a primary care provider, an oncologist, or a surgeon (guideline-nonadherent). The guideline-nonadherent proportion increased from 7.8% in women diagnosed in 2006 to 12.2% in those diagnosed in 2014 (two-sided Wald P < .001). During years 2-6, guideline-nonadherence was also associated with older age, nonwhite race, no radiation, no chemotherapy, no endocrine therapy, and increasing time after surgery. There is a substantial and increasing rate of inadequate follow-up among breast cancer survivors. This has the potential to impair outcomes.

Integrating Family Caregivers of People With Alzheimer's Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer's disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers (n = 42), three included non-spousal caregivers (n = 36), and one included people with MCI (n = 15). Seven potential best practices were identified, including the following: "acknowledge caregivers' role and assess unmet needs and capacity to care" and "communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers." Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

Concordance of Patient and Caregiver Reports on the Quality of Colorectal Cancer Care.

PURPOSE: We aimed to better understand how similarly patients with colorectal cancer and caregivers view care quality and to assess factors that may influence concordance. MATERIALS AND METHODS: We conducted a secondary analysis of paired patient and caregiver quality ratings of colorectal cancer care in three specific domains: surgery, chemotherapy overall, and chemotherapy nursing. Agreement was assessed with difference scores, concordance with Gwet second-order agreement statistics (AC2), and variation in agreement with stratified analyses. We examined whether the care experiences of patients and caregivers were associated with top-box (most-positive) ratings and examined variations in concordance on the basis of the presence of a top-box score. RESULTS: Four hundred seventeen patient-caregiver dyads completed the surveys. Quality-of-care ratings were positively skewed, with most dyads indicating top-box ratings. Patient and caregiver care experiences were highly associated with top-box ratings. Overall patient-caregiver concordance was very high for all three care domains (surgery: AC2, 0.87 [95% CI, 0.83 to 0.90]; chemotherapy overall: AC2, 0.84 [95% CI, 0.79 to 0.88]; chemotherapy nursing: AC2, 0.91 [95% CI, 0.87 to 0.94]). Stratified analyses of patient and caregiver characteristics did not identify any patterns that consistently affected concordance. The concordance statistic significantly decreased for all three outcomes (P < .001), however, when the patient or caregiver assessed quality as anything other than top box. CONCLUSION: Caregiver and patient reports on care quality were highly concordant for top-box care and did not vary with patient or caregiver factors. Additional exploration is needed to identify reasons for increased variability when the quality scores were less than a top-box response.

Correction to: The effect of routine training on the self-efficacy of informal caregivers of colorectal cancer patients.

The "NCI Grant No. 5R25CA116339, Outcomes Research Branch of the National Cancer Institute, National Institutes of Health" is not included in the Funding information. The below is the correct "Funding/Support".

Promoting Primary Palliative Care in Severe Chronic Obstructive Pulmonary Disease: Symptom Management and Preparedness Planning.

Chronic obstructive pulmonary disease (COPD) poses challenges not only in symptom management but also in prognostication. Managing COPD requires clinicians to be proficient in the primary palliative care skills of symptom management and communication focused on eliciting goals and preferences. Dyspnea should initially be managed with the combination of long-acting muscarinic antagonists and long-acting ß-agonist inhalers, adding inhaled corticosteroids if symptoms persist. Opioids for the relief of dyspnea are safe when used at appropriate doses. Oxygen is only effective for relieving dyspnea in patients with severe hypoxemia. The relapsing-remitting nature of COPD makes prognostication challenging; however, there are tools to guide clinicians and patients in making plans both with respect to prognosis and symptom burden. Preparedness planning techniques promote detailed culturally appropriate conversations which allow patients and clinicians to consider disease-specific complications and develop goal-concordant treatment plans.

Update in Hospital Palliative Care: Symptom Management, Communication, Caregiver Outcomes, and Moral Distress.

BACKGROUND: Updated knowledge of the palliative care (PC) literature is needed to maintain competency and best address the PC needs of hospitalized patients. We critiqued the recent PC literature with the highest potential to impact hospital practice. METHODS: We reviewed articles published between January 2016 and December 2016, which were identified through a handsearch of leading journals and a MEDLINE search. The final 9 articles selected were determined by consensus based on scientific rigor, relevance to hospital medicine, and impact on practice. RESULTS: Key findings include the following: scheduled antipsychotics were inferior to a placebo for nonterminal delirium; a low-dose morphine was superior to a weak opioid for moderate cancer pain; methadone as a coanalgesic improved high-intensity cancer pain; many hospitalized patients on comfort care still receive antimicrobials; video decision aids improved the rates of advance care planning (ACP) and hospice use and decreased costs; standardized, PC-led intervention did not improve psychological outcomes in families of patients with a chronic critical illness; caregivers of patients surviving a prolonged critical illness experienced high and persistent rates of depression; people with non-normative sexuality or gender faced additional stressors with partner loss; and physician trainees experienced significant moral distress with futile treatments. CONCLUSIONS: Recent research provides important guidance for clinicians caring for hospitalized patients with serious illnesses, including symptom management, ACP, moral distress, and outcomes of critical illness.

Symptoms Reported by Frail Elderly Adults Independently Predict 30-Day Hospital Readmission or Emergency Department Care.

OBJECTIVES: To assess the degree to which self-reported symptoms predict unplanned readmission or emergency department (ED) care within 30 days of high-risk, elderly adults enrolled in a posthospitalization care transition program (CTP). DESIGN: Retrospective cohort study. SETTING: Posthospitalization CTP at Mayo Clinic, Rochester, Minnesota, from January 1, 2013, through March 3, 2015. PARTICIPANTS: Frail, elderly adults (N = 230; mean age 83.5 ± 8.3, 46.5% male). MEASUREMENTS: Charlson Comorbidity Index (CCI) and self-reported symptoms, measured using the Edmonton Symptom Assessment System (ESAS), were ascertained upon CTP enrollment. RESULTS: Mean CCI was 3.9 ± 2.3. Of 51 participants returning to the hospital within 30 days of discharge, 13 had ED visits, and 38 were readmitted. Age, sex, and CCI were not significantly different between returning and nonreturning participants, but returning participants were significantly more likely to report shortness of breath (P = .004), anxiety (P = .02), depression (P = .02), and drowsiness (P = .01). Overall ESAS score was also a significant predictor of hospital return (P = .01). CONCLUSION: Four self-reported symptoms and overall ESAS score, but not CCI, ascertained after hospital discharge were strong predictors of hospital return within 30 days. Including symptoms in risk stratification of high-risk elderly adults may help target interventions and reduce readmissions.

Science of health care delivery milestones for undergraduate medical education.

BACKGROUND: The changing healthcare landscape requires physicians to develop new knowledge and skills such as high-value care, systems improvement, population health, and team-based care, which together may be referred to as the Science of Health Care Delivery (SHCD). To engender public trust and confidence, educators must be able to meaningfully assess physicians' abilities in SHCD. We aimed to develop a novel set of SHCD milestones based on published Accreditation Council for Graduate Medical Education (ACGME) milestones that can be used by medical schools to assess medical students' competence in SHCD. METHODS: We reviewed all ACGME milestones for 25 specialties available in September 2013. We used an iterative, qualitative process to group the ACGME milestones into SHCD content domains, from which SHCD milestones were derived. The SHCD milestones were categorized within the current ACGME core competencies and were also mapped to Association of American Medical Colleges' Entrustable Professional Activities (AAMC EPAs). RESULTS: Fifteen SHCD sub-competencies and corresponding milestones are provided, grouped within ACGME core competencies and mapped to multiple AAMC EPAs. CONCLUSIONS: This novel set of milestones, grounded within the existing ACGME competencies, defines fundamental expectations within SHCD that can be used and adapted by medical schools in the assessment of medical students in this emerging curricular area. These milestones provide a blueprint for SHCD content and assessment as ongoing revisions to milestones and curricula occur.

PREDICTing Mortality in the Emergency Department: External Validation and Derivation of a Clinical Prediction Tool.

BACKGROUND: The Choosing Wisely campaign has called for better engagement of palliative and hospice care services for patients in the emergency department (ED). PREDICT is a clinical prediction tool that was derived in an Australian ED cohort. It assesses a patient's risk of mortality at 1 year to select those who would benefit from advanced care planning. Such goals-of-care discussion can improve patients' ability to communicate what they want out of their healthcare and, in cases of end of life, potentially reduce the number of futile interventions. Using a cutoff of 13 points, PREDICT had a reported 95.3% specificity and 53.9% sensitivity for 1-year mortality. We externally validated PREDICT and derived a simpler modified PREDICT tool to systematically identify high-risk patients eligible for goals-of-care discussions and palliative care consultation in the ED. METHODS: This was an observational cohort study of a random sample of 927 patients aged 55+ seen in the ED in 2014. We identified advance healthcare directives (AHDs) on file. We summarized diagnostic accuracy of the clinical tool to predict 1-year mortality using sensitivity, specificity, and area under the curve (AUC). We refined PREDICT using multivariable modeling. We followed reporting guidelines including STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) for cohort studies and Standards for Reporting of Diagnostic Accuracy (STARD). RESULTS: A total of 927 patients were included: 55.0% were male, 63 (7.0%) were nursing home residents, 389 (42.0%) patients had an AHD in their medical record at the time of ED visit, and 245 (26.4%) were deceased at 1 year. Of the 780 patients with PREDICT scores < 13, a total of 164 (21.0%; 95% confidence interval [CI] = 18.3-24.1) were deceased at 1 year, and of the 147 patients with PREDICT scores ≥ 13, a total of 81 (55.1%; 95% CI = 46.7-63.2) were deceased at 1 year. The AUC of the PREDICT score was 0.717 (95% CI = 0.680-0.754), sensitivity was 33.1% (95% CI = 27.3-39.4), and specificity was 90.3% (95% CI = 87.8-92.4) to predict 1-year mortality. The modified PREDICT tool resulted in an AUC of 0.709 (95% CI = 0.671-0.747). We decided to select this model as the preferred model, as the variable of intensive care unit (ICU) admission with multiorgan failure can be difficult to assess in the ED and may delay advanced care planning. Reweighting the score did not improve fit or the AUC, so points assigned to each variable were not adjusted. CONCLUSION: PREDICT is an easy tool to administer to be able to identify patients who are at high risk of 1-year mortality and who could benefit from AHDs, goals-of-care discussion, and when appropriate in the context of an end-of-life setting, palliative medicine consultation. External validation of PREDICT was successful in our population. We simplified PREDICT and derived a new tool, the modified PREDICT minus ICU tool, without significantly altering the sensitivity, specificity, and AUC for death at 1 year. The next steps include external validation of the newly derived rule and prospective implementation.

Ways to Write a Milestone: Approaches to Operationalizing the Development of Competence in Graduate Medical Education.

PURPOSE: To identify approaches to operationalizing the development of competence in Accreditation Council for Graduate Medical Education (ACGME) milestones. METHOD: The authors reviewed all 25 "Milestone Project" documents available on the ACGME Web site on September 11, 2013, using an iterative process to identify approaches to operationalizing the development of competence in the milestones associated with each of 601 subcompetencies. RESULTS: Fifteen approaches were identified. Ten focused on attributes and activities of the learner, such as their ability to perform different, increasingly difficult tasks (304/601; 51%), perform a task better and faster (171/601; 45%), or perform a task more consistently (123/601; 20%). Two approaches focused on context, inferring competence from performing a task in increasingly difficult situations (236/601; 29%) or an expanding scope of engagement (169/601; 28%). Two used socially defined indicators of competence such as progression from "learning" to "teaching," "leading," or "role modeling" (271/601; 45%). One approach focused on the supervisor's role, inferring competence from a decreasing need for supervision or assistance (151/601; 25%). Multiple approaches were often combined within a single set of milestones (mean 3.9, SD 1.6). CONCLUSIONS: Initial ACGME milestones operationalize the development of competence in many ways. These findings offer insights into how physicians understand and assess the developmental progression of competence and an opportunity to consider how different approaches may affect the validity of milestone-based assessments. The results of this analysis can inform the work of educators developing or revising milestones, interpreting milestone data, or creating assessment tools to inform milestone-based performance measures.

THE BURDEN ON DEMENTIA CAREGIVERS: How Can Communities and Health Care Organizations Help?

Family members are integral to the care, safety and overall well-being of persons with Alzheimer's disease and related dementias. Being a caregiver is often associated with significant isolation as well as emotional, psychosocial and financial burden. In recognition of the toughness of this job and the increasing prevalence of dementia, there has been growing momentum among public policy makers and within communities and the health care system to address the challenges caregivers face. This article describes efforts in Minnesota communities to do so. The authors make recommendations for communities and health care systems.

The effect of routine training on the self-efficacy of informal caregivers of colorectal cancer patients.

PURPOSE: Little is known about the degree to which caregiver training as part of routine clinical care influences caregiver self-efficacy. The objective of this study was to examine the relationship between training during routine clinical cancer care and self-efficacy among caregivers of colorectal cancer patients. METHODS: Caregivers completed a self-administered questionnaire about their experiences with training for specific patient problems and about their task-specific and general caregiving self-efficacy. Associations between training and self-efficacy were examined for each problem using multivariate logistic regression adjusted for caregiver age, race, care burden, education, perception of patient's health, and patient stage of disease. RESULTS: Four hundred seventeen caregivers completed the survey (70% response rate), of whom 374 (90%) were female and 284 (68%) were the patient's spouse/partner. Overall, 77 (38%) reported inadequate training for pain, 80 (38%) for bowel, 121 (48%) for fatigue, 65 (26%) for medication administration, and 101 (40%) for other symptoms. The odds of having low self-efficacy were significantly higher among those with perceptions of inadequate training across the following cancer-related problems: pain 10.10 (3.36, 30.39), bowel 5.04 (1.98, 12.82), fatigue 8.45 (3.22, 22.15), managing medications 9.00 (3.30, 24.51), and other 3.87 (1.68, 8.93). CONCLUSIONS: Caregivers commonly report inadequate training in routine colorectal cancer care. Significant and consistent associations between training adequacy and self-efficacy were found. This study supports the value of training caregivers in common cancer symptoms. Further work on how and when to provide caregiver training to best impact self-efficacy is needed.