Validating claims-based definitions for deprescribing: Bridging the gap between clinical and administrative data.

BACKGROUND: Limited research has evaluated the validity of claims-based definitions for deprescribing. OBJECTIVES: Evaluate the validity of claims-based definitions of deprescribing against electronic health records (EHRs) for deprescribing of benzodiazepines (BZDs) after a fall-related hospitalization. METHODS: We used a novel data linkage between Medicare fee-for-service (FFS) and Part D with our health system's EHR. We identified patients aged ≥66 years with a fall-related hospitalization, continuous enrollment in Medicare FFS and Part D for 6 months pre- and post-hospitalization, and ≥2 BZD fills in the 6 months pre-hospitalization. Using a standardized EHR abstraction tool, we adjudicated deprescribing for a sub-sample with a fall-related hospitalization at UNC. We evaluated the validity of claims-based deprescribing definitions (e.g., gaps in supply, dosage reductions) versus chart review using sensitivity and specificity. RESULTS: Among 257 patients in the overall sample, 44% were aged 66-74 years, 35% had Medicare low-income subsidy, 79% were female. Among claims-based definitions using gaps in supply, the prevalence of BZD deprescribing ranged from 8.2% (no refills) to 36.6% (30-day gap). When incorporating dosage, the prevalence ranged from 55.3% to 65.8%. Among the validation sub-sample (n = 47), approximately one-third had BZDs deprescribed in the EHR. Compared to EHR, gaps in supply from claims had good sensitivity, but poor specificity. Incorporating dosage increased sensitivity, but worsened specificity. CONCLUSIONS: The sensitivity of claims-based definitions for deprescribing of BZDs was low; however, the specificity of a 90-day gap was >90%. Replication in other EHRs and for other low-value medications is needed to guide future deprescribing research.

Transitional Care of People With Dementia and Caregivers in the ADRD-PC Trial: A Mixed Methods Study.

CONTEXT: People with late-stage Alzheimer's diseases and related dementias (ADRD) have high risk for postacute complications and readmission; however, minimal research describes hospital transitional care. OBJECTIVE: Within the context of the ongoing ADRD-PC clinical trial, the purpose of this study was to describe the content and quality of transitional care of people with ADRD. METHODS: Descriptive mixed methods using data from a retrospective chart review and interviews with palliative care social workers and a nurse providing transitional care in the ADRD-PC clinical trial. RESULTS: Of 40 dyads of people with late-stage ADRD and their caregivers, palliative care plans were documented for 29 patients (73%); completed postdischarge calls in 72 hours were made for 39 (98%) caregivers and calls in 2 weeks were made for 33 (78%). The content of postdischarge care was promoting continuity, identifying resources, helping caregivers feel heard, troubleshooting problems, and providing grief support. Challenges during transitional care were limited time to engage caregivers in hospital-based palliative care, educate caregivers about palliative care plans, coordinate care after transfers to long term care, and the scarcity of community ADRD resources. Facilitators of high quality transitional care were continuity of staff who saw the patient or caregiver across hospital and postacute contacts, caregiver understanding of goals of care, written palliative care plans, and resources for postdischarge care. CONCLUSION: Findings indicate high quality dementia-specific transitional care occurs when staff have resources, such as ADRD training and care planning template, to pull the hospital palliative care plan forward into the postdischarge destination, help families fit the plan to new circumstances, and manage strain and grief related to changes in health and function.

Novel Definitions of Wellness and Distress among Family Caregivers of Patients with Acute Cardiorespiratory Failure: A Qualitative Study.

Rationale: Family caregivers of patients with acute cardiorespiratory failure are at high risk for distress, which is typically defined as the presence of psychological symptoms such as anxiety, depression, or posttraumatic stress. Interventions to reduce caregiver distress and increase wellness have been largely ineffective to date. An incomplete understanding of caregiver wellness and distress may hinder efforts at developing effective support interventions. Objectives: To allow family caregivers to define their experiences of wellness and distress 6 months after patient intensive care unit (ICU) admission and to identify moderators that influence wellness and distress. Methods: Primary family caregivers of adult patients admitted to the medical ICU with acute cardiorespiratory failure were invited to participate in a semistructured interview 6 months after ICU admission as part of a larger prospective cohort study. Interview guides were used to assess caregiver perceptions of their own well-being, record caregiver descriptions of their experiences of family caregiving, and identify key stress events and moderators that influenced well-being during and after the ICU admission. This study was guided by the Chronic Traumatic Stress Framework conceptual model, and data were analyzed using the five-step framework approach. Results: Among 21 interviewees, the mean age was 58 years, 67% were female, and 76% were White. Nearly half of patients (47%) had died before the caregiver interview. At the time of the interview, 9 caregivers endorsed an overall sense of distress, 10 endorsed a sense of wellness, and 2 endorsed a mix of both. Caregivers defined their experiences of wellness and distress as multidimensional and composed of four main elements: 1) positive versus negative physical and psychological outcomes, 2) high versus low capacity for self-care, 3) thriving versus struggling in the caregiving role, and 4) a sense of normalcy versus ongoing life disruption. Postdischarge support from family, friends, and the community at large played a key role in moderating caregiver outcomes. Conclusions: Caregiver wellness and distress are multidimensional and extend beyond the absence or presence of psychological outcomes. Future intervention research should incorporate novel outcome measures that include elements of self-efficacy, preparedness, and adaptation and optimize postdischarge support for family caregivers.

Pre-post-evaluation of a dementia-specific advance care planning toolkit for Japanese primary care clinicians.

BACKGROUND: The population of people living with dementia (PLwD) continues to grow in Japan where advance care planning (ACP) for PLwD is relatively new. Our aim was to evaluate the feasibility and cultural acceptability of a dementia-specific ACP communication skills toolkit for Japanese primary care clinicians. METHODS: We delivered 13 training sessions in primary care clinics across central Japan and conducted a post-training survey to assess whether the toolkit increased confidence in dementia-specific ACP communication skills and the acceptability of the toolkit with the following four statements: (1) The language in the sessions was clear, (2) The sessions took an appropriate amount of time to complete, (3) The design of the sessions was an effective educational method, and (4) The sessions were culturally appropriate for communication with Japanese patients with dementia and their family members. We asked participants to respond using a 5-point Likert scale from strongly agree to strongly disagree. RESULTS: All participants were Japanese and included 80 physicians (mean age 39.8 years), 33 nurses (mean age 45.7 years), and 58 other participants (mean age 42.9 years), who were 30.0%, 87.9%, and 55.2% female, respectively. Most participants practiced in rural settings. In pre- post-comparisons, participant confidence increased in determining capacity, understanding dementia prognosis, goals of care, eliciting surrogates, recommending self-care practices to families, and leading family meetings (all p < 0.001). Most participants strongly agreed or agreed that the toolkit was an effective method (96.9%), took an appropriate amount of time (94.5%), contained clear language (89.8%), and was culturally appropriate (73.6%). CONCLUSIONS: Dementia-specific ACP communication skills toolkit can be delivered in Japan. Japanese primary care clinicians generally felt the dementia-specific ACP toolkit increased their confidence in ACP communication skills and was acceptable. The language, time, and design were well received, though further work is needed to improve the cultural appropriateness of the toolkit.

A comparison of dementia diagnoses and cognitive function measures in Medicare claims and the Minimum Data Set.

BACKGROUND: Gold standard dementia assessments are rarely available in large real-world datasets, leaving researchers to choose among methods with imperfect but acceptable accuracy to identify nursing home (NH) residents with dementia. In healthcare claims, options include claims-based diagnosis algorithms, diagnosis indicators, and cognitive function measures in the Minimum Data Set (MDS), but few studies have compared these. We evaluated the proportion of NH residents identified with possible dementia and concordance of these three. METHODS: Using a 20% random sample of 2018-2019 Medicare beneficiaries, we identified MDS admission assessments for non-skilled NH stays among individuals with continuous enrollment in Medicare Parts A, B, and D. Dementia was identified using: (1) Chronic Conditions Warehouse (CCW) claims-based algorithm for Alzheimer's disease and non-Alzheimer's dementia; (2) MDS active diagnosis indicators for Alzheimer's disease and non-Alzheimer's dementias; and (3) the MDS Cognitive Function Scale (CFS) (at least mild cognitive impairment). We compared the proportion of admissions with evidence of possible dementia using each criterion and calculated the sensitivity, specificity, and agreement of the CCW claims definition and MDS indicators for identifying any impairment on the CFS. RESULTS: Among 346,013 non-SNF NH admissions between 2018 and 2019, 57.2% met criteria for at least one definition (44.7% CFS, 40.7% CCW algorithm, 26.0% MDS indicators). The MDS CFS uniquely identified the greatest proportion with evidence of dementia. The CCW claims algorithm had 63.7% sensitivity and 78.1% specificity for identifying any cognitive impairment on the CFS. Active diagnosis indicators from the MDS had lower sensitivity (47.0%), but higher specificity (91.0%). CONCLUSIONS: Claims- and MDS-based methods for identifying NH residents with possible dementia have only partial overlap in the cohorts they identify, and neither is an obvious gold standard. Future studies should seek to determine whether additional functional assessments from the MDS or prescriptions can improve identification of possible dementia in this population.

Development and Evaluation of a Multisource Approach to Extend Mortality Follow-Up for Older Adults With Advanced Cancer Enrolled in Randomized Trials.

PURPOSE: Mortality data can complement primary end points from cancer clinical trials. Yet, identifying deaths after trial completion is challenging, as timely and comprehensive vital status data are unavailable in the United States. We developed and evaluated a multisource approach to capture death data after clinical trial completion. METHODS: Individuals age 70 years and older with incurable solid tumors or lymphoma and ≥1 aging-related condition were enrolled from October 2014 to March 2019 (ClinicalTrials.gov identifier: NCT02107443 and NCT02054741). Participants provided consent to link trial information to external sources. We developed a stepped approach for extended death capture using (1) active trial follow-up up to 1 year, (2) linkage to the National Death Index (NDI), and (3) obituary searches, thus generating a 5-year survival curve. In a random sample of 50 participants who died during trial follow-up, we estimated sensitivity of death data using NDI and obituary sources and computed survival times by data source. RESULTS: The two trials enrolled 1,169 participants; mean age was 76 years; 46% were female; and gastrointestinal cancer (30%) and lung cancer (26%) were the most common cancer types. Across data sources, maximum follow-up was >7 years; 5-year survival was 18%. In total, there were 841 deaths: 603 identified during trial follow-up; 199 from the NDI; and 39 from obituary searches. The sensitivity for death capture was 92% for the NDI and 94% for the obituary searches compared with the trial data, and computed survival times were similar across data sources. CONCLUSION: Extending clinical trial mortality follow-up through linkage with external data sources was feasible and accurate. Future cancer clinical trials should collect necessary consent and patient identifiers for vital status linkages that can enhance understanding of longer-term outcomes.