Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE): Protocol for a randomized controlled trial in persons with advanced dementia.

BACKGROUND: Dementia affects 6.5 million persons in the U.S., a number which is expected to double by 2060. More than half of persons with dementia die at home, creating an enormous burden for both patients and caregivers. However, there is a paucity of research on community-based palliative care interventions for advanced dementia. OBJECTIVES: The Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE) study is a randomized trial to test the effectiveness of a collaborative predominantly telehealth home-based intervention for persons with advanced dementia residing in the community and their primary, informal caregivers. The primary aim is to determine if this palliative care focused supportive intervention is superior to usual care in reducing neuropsychiatric symptoms of dementia. Secondarily, intervention effects on other patient symptoms (e.g., pain), caregiver distress and depression, and emergency department (ED)/hospitalization events are examined. METHODS: The study population consists of participant pairs comprising a person with dementia and their primary, informal caregiver. The person with dementia must be ≥65 years old, with a clinical diagnosis of moderate to severe dementia. A total of 201 demographically and socioeconomically diverse participant pairs have been randomized to the IN-PEACE care coordination intervention (n = 99) or usual care (n = 102). Outcome assessments are conducted at baseline, and quarterly for up to 2 years (3, 6, 9, 12, 15, 18, 21, and 24 months). DISCUSSION: IN-PEACE results will inform care for the large number of individuals with advanced dementia residing in the community and enable informal caregivers to provide effective home-based care. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT03773757.

Prevalence and Predictors of Symptoms in Persons with Advanced Dementia Living in the Community.

Background: Behavioral, psychological, and physical symptoms are prevalent in advanced dementia, as well as major contributors to poor quality of life, health care costs, caregiver burden, and nursing home placement. Objectives: To determine the frequency and severity of symptoms in persons with advanced dementia living in the community, as well as the association between symptoms and satisfaction with care, and the identification of factors associated with symptom burden. Design: Baseline data from a clinical trial testing the effectiveness of collaborative care home-based management for patients with advanced dementia. Setting/Subjects: Two hundred and one patient-caregiver dyads from an urban area in the United States, who were still residing in the community. Measurements: Caregivers completed the Symptom Management in End-of-Life Dementia (SM-EOLD) and Satisfaction with Care in End-of-Life Dementia (SWC-EOLD) scales. Results: Patients' mean age was 83.1; 67.7% were women, and most were either White (50.2%) or African American (43.8%). Most (88.1%) had severe dementia (Functional Assessment Staging Tool [FAST] stage 6 or 7). SM-EOLD mean score was 29.3 (on 0-45 scale) and SWC-EOLD score was 32.6 (on 10-40 scale). Pain, agitation, anxiety, and resistiveness to care were present at least weekly in ≥40% of patients. Multivariable linear regression modeling showed that higher neuropsychiatric symptom severity (assessed by the Neuropsychiatric Inventory), increased caregiver strain, and higher medical comorbidity were all independently associated with increased symptom burden. Satisfaction with care was high and had only a modest correlation (r = 0.20) with symptom burden. Conclusions: Community-dwelling patients with advanced dementia and their caregivers may benefit from home-based palliative care interventions to identify and manage burdensome symptoms.

Ambulatory Safety Nets to Reduce Missed and Delayed Diagnoses of Cancer.

BACKGROUND: An ambulatory safety net (ASN) is an innovative organizational intervention for addressing patient safety related to missed and delayed diagnoses of abnormal test results. ASNs consist of a set of tools, reports and registries, and associated work flows to create a high-reliability system for abnormal test result management. METHODS: Two ASNs implemented at an academic medical center are described, one focusing on colon cancer and the other on lung cancer. Data from electronic registries and chart reviews were used to evaluate the effectiveness of the ASNs, which were defined as follows: colon cancer-the proportion of patients who were scheduled for or completed a colonoscopy following safety net team outreach to the patient; lung cancer-the proportion of patients for whom the safety net was able to identify and implement appropriate follow-up, as defined by scheduled or completed chest CT. RESULTS: The effectiveness of the colon cancer ASN was 44.0%, and the effectiveness of the lung cancer ASN was 56.9%. The ASNs led to the development of registries to address patient safety, fostered collaboration among interdisciplinary teams of clinicians and administrative staff, and created new work flows for patient outreach and tracking. CONCLUSION: Two ASNs were successfully implemented at an academic medical center to address missed and delayed recognition of abnormal test results related to colon cancer and lung cancer. The ASNs are providing a framework for development of additional safety nets in the organization.

Improving Nursing Facility Care Through an Innovative Payment Demonstration Project: Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care Phase 2.

Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) is a 2-phase Center for Medicare and Medicaid Innovations demonstration project now testing a novel Medicare Part B payment model for nursing facilities and practitioners in 40 Indiana nursing facilities. The new payment codes are intended to promote high-quality care in place for acutely ill long-stay residents. The focus of the initiative is to reduce hospitalizations through the diagnosis and on-site management of 6 common acute clinical conditions (linked to a majority of potentially avoidable hospitalizations of nursing facility residents): pneumonia, urinary tract infection, skin infection, heart failure, chronic obstructive pulmonary disease or asthma, and dehydration. This article describes the OPTIMISTIC Phase 2 model design, nursing facility and practitioner recruitment and training, and early experiences implementing new Medicare payment codes for nursing facilities and practitioners. Lessons learned from the OPTIMISTIC experience may be useful to others engaged in multicomponent quality improvement initiatives.

Possible Airborne Person-to-Person Transmission of Mycobacterium bovis - Nebraska 2014-2015.

Mycobacterium bovis, one of several mycobacteria of the M. tuberculosis complex, is a global zoonotic pathogen that primarily infects cattle. Humans become infected by consuming unpasteurized dairy products from infected cows; possible person-to-person airborne transmission has also been reported. In April 2014, a man in Nebraska who was born in Mexico was determined to have extensive pulmonary tuberculosis (TB) caused by M. bovis after experiencing approximately 3 months of cough and fever. Four months later, a U.S.-born Hispanic girl from a nearby town who had been ill for 4-5 months was also determined to have pulmonary TB caused by M. bovis. The only social connection between the two patients was attendance at the same church, and no common dietary exposure was identified. Both patients had pulmonary cavities on radiography and acid-fast bacilli (AFB) on sputum-smear microscopy, indicators of being contagious. Whole-genome sequencing results of the isolates were nearly indistinguishable. Initial examination of 181 contacts determined that 39 (22%) had latent infection: 10 (42%) of 24 who had close exposure to either patient, 28 (28%) of 100 who were exposed to one or both patients in church, and one (2%) of 57 exposed to the second patient at a school. Latent infection was diagnosed in six contacts on follow-up examination, 2 months after an initial negative test result, for an overall latent infection rate of 25%. No infected contacts recalled consuming unpasteurized dairy products, and none had active TB disease at the initial or secondary examination. Persons who have M. bovis TB should be asked about consumption of unpasteurized dairy products, and contact investigations should follow the same guidance as for M. tuberculosis TB.

The Optimizing Patient Transfers, Impacting Medical Quality, andImproving Symptoms:Transforming Institutional Care approach: preliminary data from the implementation of a Centers for Medicare and Medicaid Services nursing facility demonstration project.

The Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project aims to reduce avoidable hospitalizations of long-stay residents enrolled in 19 central Indiana nursing facilities. This clinical demonstration project, funded by the Centers for Medicare and Medicaid Services Innovations Center, places a registered nurse in each nursing facility to implement an evidence-based quality improvement program with clinical support from nurse practitioners. A description of the model is presented, and early implementation experiences during the first year of the project are reported. Important elements include better medical care through implementation of Interventions to Reduce Acute Care Transfers tools and chronic care management, enhanced transitional care, and better palliative care with a focus on systematic advance care planning. There were 4,035 long-stay residents in 19 facilities enrolled in OPTIMISTIC between February 2013 and January 2014. Root-cause analyses were performed for all 910 acute transfers of these long stay residents. Of these transfers, the project RN evaluated 29% as avoidable (57% were not avoidable and 15% were missing), and opportunities for quality improvement were identified in 54% of transfers. Lessons learned in early implementation included defining new clinical roles, integrating into nursing facility culture, managing competing facility priorities, communicating with multiple stakeholders, and developing a system for collecting and managing data. The success of the overall initiative will be measured primarily according to reduction in avoidable hospitalizations of long-stay nursing facility residents.

Caregiver perspectives on cancer screening for persons with dementia: "why put them through it?".

OBJECTIVES: To describe the perspectives of family caregivers toward stopping cancer screening tests for their relatives with dementia and identify opportunities to reduce harmful or unnecessary screening. DESIGN: Focus group study. SETTING: Alzheimer's Association support groups for family members of individuals with dementia. PARTICIPANTS: Four focus groups including 32 caregivers (25 female; 24 white, 7 African American, one American/Indian; mean age 65.5, range 49-85). MEASUREMENTS: Focus group transcripts were transcribed and analyzed using methods of grounded theory. RESULTS: Caregivers considered decisions to stop cancer screening in terms of quality of life and burden on the patient and caregiver. Many described having to intervene in the patient's care to stop unnecessary or harmful screening, and others met resistance when they advocated for stopping. Physicians varied widely in their knowledge of dementia care and willingness to consider cessation of screening. CONCLUSION: Many family caregivers wish to stop cancer screening tests as dementia progresses and are relieved when physicians bring it up. Caregivers are open to discussions of screening cessation that focus on quality of life, burdens, and benefits. Interventions are needed to increase caregiver and clinician discussion of screening cessation and to increase clinician awareness of the need to reconsider cancer screening in individuals with dementia.

Older adults and forgoing cancer screening: "I think it would be strange".

IMPORTANCE: Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients' perceptions regarding cessation of cancer screening. Information on older adults' views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening. OBJECTIVE: To obtain a deeper understanding of older adults' perspectives on screening cessation and their experiences communicating with clinicians about this topic. DESIGN: Semistructured interview study. SETTING: Senior health center affiliated with an urban hospital. PARTICIPANTS: We interviewed 33 older adults presenting to a senior health center. Their median age was 76 years (range, 63-91 years). Of the 33 participants, 27 were women; 15 were African American, 16 were white, 1 was Asian, and 1 was American Indian. MAIN OUTCOME MEASURES: We transcribed audio recordings of interviews and analyzed them using methods of grounded theory to identify themes and illustrative quotes. RESULTS: Undergoing screening tests was perceived by participants as morally obligatory. Although many saw continued screening as a habit or custom not involving any decision, cessation of screening would require a major decision. Many asserted that they had never discussed screening cessation with their physicians or considered stopping on their own; some reported being upset when their physician recommended stopping. Although some would accept a physician's strong recommendation to stop, others thought that such a physician's recommendation would threaten trust or lead them to get another opinion. Participants were skeptical about the role of statistics and the recommendations of government panels in screening decisions but were more favorable toward stopping because of the balance of risks and benefits, complications, or test burdens. CONCLUSIONS AND RELEVANCE: For many older adults, stopping screening is a major decision, but continuing screening is not. A physician's recommendation to stop may threaten patient trust. Effective strategies to reduce nonbeneficial screening may include discussion of the balance of risks and benefits, complications, or burdens.

Cognitive impairment: an independent predictor of excess mortality: a cohort study.

BACKGROUND: Dementia is a leading cause of death among older adults, but less is known about the mortality risk associated with milder forms of cognitive impairment. OBJECTIVE: To determine whether cognitive impairment is independently associated with increased long-term mortality in primary care patients aged 60 years and older. DESIGN: Linkage of electronic health records from a cohort recruited between January 1991 and May 1993 with data from the National Death Index through 31 December 2006. SETTING: A public safety-net hospital and its community health centers. PATIENTS: 3957 older adults aged 60 to 102 years who were screened at scheduled primary care appointments. MEASUREMENTS: At baseline, patients were screened for cognitive impairment by using the Short Portable Mental Status Questionnaire and were categorized into groups with no, mild, or moderate to severe cognitive impairment. Baseline data from comprehensive electronic health records were linked with vital status obtained from the National Death Index. Kaplan-Meier survival curves compared time to death for the groups with cognitive impairment. Cox proportional hazards models controlled for mortality risk factors. RESULTS: At baseline, 3157 patients had no cognitive impairment, 533 had mild impairment, and 267 had moderate to severe impairment. Overall, 2385 of the 3957 patients (60.3%) died during the observation period: 1812 (57.4%) patients with no cognitive impairment, 363 (68.1%) patients with mild impairment, and 210 (78.7%) patients with moderate to severe impairment. Both mild and moderate to severe cognitive impairment were associated with increased mortality hazard independent of other mortality risk factors (hazard ratio, 1.184 [95% CI, 1.051 to 1.334] and for mild impairment 1.447 [CI, 1.235 to 1.695] for moderate to severe impairment). Median survival for all 3957 participants was 129 months. Median survival for participants with no, mild, and moderate to severe cognitive impairment was 138, 106, and 63 months, respectively. LIMITATIONS: Cognition was assessed only at enrollment by using a screening instrument. Participants were drawn from a single safety-net health system and had low educational and socioeconomic status, which limits generalizability to other populations. Changes in cognition, function, and comorbid conditions were not measured over time. CONCLUSION: Both mild and moderate to severe cognitive impairment as identified by the Short Portable Mental Status Questionnaire are associated with an increased risk for mortality. PRIMARY FUNDING SOURCE: Agency for Healthcare Research and Quality.

Palliative care for patients with dementia: a national survey.

OBJECTIVES: To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN: Telephone and Web-based surveys. SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list. PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS: Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care. CONCLUSION: Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.