key: cord-0792741-0fvaf07c authors: Nguyen, Huong Q.; Borson, Soo; Khang, Peter; Langer‐Gould, Annette; Wang, Susan E.; Carrol, Jarrod; Lee, Janet S. title: Dementia diagnosis and utilization patterns in a racially diverse population within an integrated health care delivery system date: 2022-03-13 journal: Alzheimers Dement (N Y) DOI: 10.1002/trc2.12279 sha: 6d1d3d7e2185f63d7c4e54eeed269bc1a2522f8e doc_id: 792741 cord_uid: 0fvaf07c INTRODUCTION: In an effort to identify improvement opportunities for earlier dementia detection and care within a large, integrated health care system serving diverse Medicare Advantage (MA) beneficiaries, we examined where, when, and by whom Alzheimer's disease and related dementias (ADRD) diagnoses are recorded as well as downstream health care utilization and life care planning. METHODS: Patients 65 years and older, continuously enrolled in the Kaiser Foundation health plan for at least 2 years, and with a first ADRD diagnosis between January 1, 2015, and December 31, 2018, comprised the incident cohort. Electronic health record data were used to identify site and source of the initial diagnosis (clinic vs hospital‐based, provider type), health care utilization in the year before and after diagnosis, and end‐of‐life care. RESULTS: ADRD prevalence was 5.5%. A total of 25,278 individuals had an incident ADRD code (rate: 1.2%) over the study period—nearly half during a hospital‐based encounter. Hospital‐diagnosed patients had higher comorbidities, acute care use before and after diagnosis, and 1‐year mortality than clinic‐diagnosed individuals (36% vs 11%). Many decedents (58%‐72%) received palliative care or hospice. Of the 55% diagnosed as outpatients, nearly two‐thirds were diagnosed by dementia specialists; when used, standardized cognitive assessments indicated moderate stage ADRD. Despite increases in advance care planning and visits to dementia specialists in the year after diagnosis, acute care use also increased for both clinic‐ and hospital‐diagnosed cohorts. DISCUSSION: Similar to other MA plans, ADRD is under‐diagnosed in this health system, compared to traditional Medicare, and diagnosed well beyond the early stages, when opportunities to improve overall outcomes are presumed to be better. Dementia specialists function primarily as consultants whose care does not appear to mitigate acute care use. Strategic targets for ADRD care improvement could focus on generating pragmatic evidence on the value of proactive detection and tracking, care planning, and the role of specialists in chronic care management. care use. Strategic targets for ADRD care improvement could focus on generating pragmatic evidence on the value of proactive detection and tracking, care planning, and the role of specialists in chronic care management. dementia, diagnosis, integrated delivery system, Medicare Advantage, utilization Alzheimer's disease and related dementias (ADRD) will reach nearly 14 million cases in the United States by 2050. 1 Concerns over persistent underdiagnosis 2 and quality of care [3] [4] [5] and the emergence of promising care management models [6] [7] [8] [9] strengthen the case for population-based approaches. 10 Nonetheless, the heterogeneity of payment models (eg, fee-forservice and various value-based designs) and organization of care delivery across diverse health systems argues for the importance of comparative systems data. Recent reports on MA enrollees [15] [16] [17] [18] consistently find lower ADRD prevalence rates (5.5-6%) than in traditional fee-for-service Medicare (≈12%), 19 differences unlikely to be attributable to out-of-pocket costs because most MA plans have no or low co-payments for provider visits that could present a barrier for ADRD diagnosis and care. Park et al. 17 found lower outpatient and hospital utilization but similar satisfaction with care among MA beneficiaries with ADRD compared to traditional Medicare, although the comparability of the two samples has been questioned. 20 Teno et al. 21 reported that MA beneficiaries dying with ADRD were less likely to receive certain burdensome and costly acute care at the end of life. In sum, ADRD detection may be poorer within MA plans, but end-of-life care for decedents may be better than in traditional Medicare. These first insights into ADRD diagnosis and utilization patterns for MA beneficiaries provide provisional benchmarks for health systems seeking to inform the development of pathways for earlier diagnosis and expectations for patient care and outcomes. We offer a case study from one large integrated health care system, aimed at understanding its own patterns of care for people with ADRD, starting with capture of first ADRD diagnoses (where, by whom, and at what stage) and the downstream health care utilization and life care planning for identified patients, as a means to inform a more systematic, population-based plan for dementia detection and care. Patients for this retrospective cohort study were drawn from Kaiser Incidence rate was calculated as the proportion of patients in the at- Among patients 65 and older without an ADRD diagnosis code before 2015, the annual ADRD incidence rate was 1.2% (Table S3) Among the cohort diagnosed in ambulatory care, socio-demographic characteristics were similar across clinician type, except for those diagnosed by neurologists/psychiatrists being slightly younger compared to the geriatrics-or primary care-diagnosed cohorts (Table 1 and Table S5 ). Few individuals (14%) diagnosed by primary care providers had a documented cognitive assessment at the time of the ADRD diagnosis, contrasting with 33% for neurologists/psychiatrists and 62% for geriatricians. For patients with any recorded cognitive assessment, mean scores (MoCA or MMSE) were consistent with moderate stage dementia at diagnosis and was similar across clinical disciplines. A total of 19,659 patients (78%) survived at least 1 year following an incident ADRD diagnostic code and remained enrolled in the health plan. Although nearly all patients in the clinic-diagnosed cohort had a second encounter that included an ADRD code within 1 year of the initial diagnosis (84%-89%), far fewer hospital-diagnosed patients had a second ADRD code (46%-61%) ( Table 2 and Table S6 ). Advance care planning increased across all cohorts, with the highest rate of completed advance directive or POLST forms for patients diagnosed by geriatricians (59%) or in the hospital (62%) (Figure 1) ; the hospitaldiagnosed cohort had more documented do not resuscitate or modified code orders. In the post-diagnosis year, there were small, albeit statistically significant, decreases in primary care visits and increases in dementia specialist visits across the clinic and hospital-diagnosed cohorts (Figure 2 ), although only a minority of patients had two or more visits to geriatrics (15%, n = 1821) or neurology/psychiatry (19%, n = 2408). Allcause acute care use increased at a similar rate for both clinic (46-50%) and hospital (65-69%) cohorts in the year post-diagnosis. The hospital cohort continued to have the highest acute ( Figure 3 ) and post-acute care use. The 1-year mortality rate after diagnosis was 22% for the overall cohort (clinic-diagnosed: 11%; hospital-diagnosed: 36%). Decedents were generally older and had more co-morbidities, and substantially higher outpatient, acute, and post-acute care utilization in the year prior to diagnosis compared to patients surviving at least 1 year after diagnosis (Table S7) . Median time from diagnosis to death was 87 days for the overall cohort (Table 3) . Between diagnosis and death, the proportion of patients with an advance directive or POLST increased from 56% to 79%. More than half (60%) of the decedents received either hospice (55%) or home palliative care (16%). There were more home deaths in the clinic-vs hospital-diagnosed cohort (45% vs 33%). In this study of diverse older adults from a large integrated health deliv- Our findings also differ from those of previous studies in that we found a higher proportion of patients first diagnosed by dementia specialists, compared to prior reports on fee-for-service Medicare beneficiaries (35% vs 15% 28 ), and differences in specialty diagnoses by race/ethnicity or spoken language were not observed in our study. Although there were modest decreases in primary care visits and increases in dementia specialist visits, the sustained high overall volume of clinic visits (mean: 11-13 visits/year) in the post-diagnosis year, coupled with increased acute care encounters, suggest that care is both intensifying and potentially more fragmented at a time when consolidation could be highly desirable. Yet, among decedents, documentation of an advance directive or POLST (75%-84%) and enrollment in homebased palliative care or hospice (58%-72%) were both high compared to prior studies, 29, 30 likely driven by the health system's increased attention to end-of-life care during the study period. The observation that 45% of all incident ADRD diagnostic codes came from a hospital-based encounter may not be surprising, since previous studies have reported the prevalence of cognitive impairment in hospitalized older adults ranging from 13% to 63% depending on the sampling and assessment methodology [31] [32] [33] [34] and that many patients with ADRD had not been previously diagnosed as outpatients. [31] [32] [33] Our data further suggest that planning for ADRD-focused follow-up was likely limited for the hospital-diagnosed cohort because only 46% The role of specialists in this integrated system deserves comment. Although Drabo et al. 28 found that only 15% of Medicare fee-forservice patients were seen by a dementia specialist, we observed a rate TA B L E 3 End-of-life characteristics for patients who died within 1 year after incident ADRD diagnosis 44 Our data indicate that for clinic-diagnosed patients who survived the first year after an incident ADRD diagnosis, acute care use increased similarly regardless of whether a primary care provider or dementia specialist made the diagnosis. Although dementia specialist care increased slightly following diagnosis, it was mostly consultative rather than longitudinal in nature, and by increasing visits, it could unintentionally impose even greater fragmentation of care and burden on an already fragile population. The role of dementia specialist care, in the diagnostic process and beyond, is an important focus for future research on patient and health system outcomes. How best to coordinate care across primary and specialist providers to maximize the well-being of older adults with ADRD and multimorbidities should be a high research priority, as reports of wellpublicized dementia care management programs, 6, 45 and, similarly, our recent evaluation of a small home-based primary care program within this health system, 46 have generally found limited if any effects of such care models on mitigating acute care use, an outcome of importance to health systems and payers, and for most patients and families. Finally, we did not find consistent evidence of differences in sociodemographic and clinical characteristics or care patterns between individuals who were and were not recognized as having a cognitive disorder (eg, MCI, memory loss, delirium) in the 2 years prior to the first ADRD code, suggesting that without systematic follow-up, such "early signals" may not be acted upon. Although we did not observe racial/ethnic differences in the assignment of these cognitive disorder codes, a recent study of California fee-for-service Medicare beneficiaries found that Asian, Black, and Hispanic beneficiaries were less likely than White beneficiaries to receive a diagnosis of MCI prior to one of ADRD, considered by the authors to signify early detection of ADRD. 47 Diagnosing ADRD "early," that is" close to the time when symptoms are first apparent, and providing individuals and families with proac- Our well-characterized older, racially diverse cohort represents the most contemporary population-based description of incident ADRD diagnosis and utilization pattern in a large integrated setting with low rates of health plan disenrollment (< 4%) 48 by place of diagnosis and clinician type. Our work provides data that can serve as a comparator for future studies in other health systems and deeper inquiry into the content of clinical care for people living with ADRD. In addition, we analyzed the hospital-diagnosed cohort separately from the clinic-diagnosed cohort and showed that prognosis varies importantly between the two groups, suggesting that future studies of ADRD prognosis consider diagnosis setting as a relevant factor. Our study has several important methodological limitations, including the use of a single encounter code for ADRD to identify the cohort, which increases sensitivity at the cost of specificity. 49 However, requiring repeat codes over longer periods of time would have eliminated individuals who died in the first year after diagnosis and resulted in a less-complete picture of diagnosis patterns. We recognize that the 1-year post-diagnosis follow-up period is relatively short, considering the long ADRD illness trajectory. We were limited to the discrete data available from the EHR, limiting assessment of domains of care quality, 50 and did not have information on caregiver characteristics 51 that might be associated with utilization. Moreover, we were not able to conduct multivariable modeling to meaningfully compare outcomes across patient cohorts due to incomplete data on key variables, for example, ADRD severity, type, and functional impairment. For hospice utilization, we did not have access to the qualifying diagnosis. In addition, we did not evaluate variations in diagnosis or utilization across KPSC's 15 service areas, which can differ in practice structure, availability of specialists, and patient characteristics, and we could not assess variations in specialist referral decisions, clinical practices, or the content of care. We described utilization, not care costs, since cost accounting in a capitated system is complex; nonetheless, acute, hospital-based care generally contributes to most of Medicare's expenses regardless of payment model. 52 In this integrated health care system, which serves mostly MA beneficiaries, we observed the same, well-known pattern of delay and underdiagnosis of ADRD that has been established in both fee-for-service and other MA populations. [15] [16] [17] [18] Dementia diagnosis tended to occur in the context of rising multimorbidity, likely when cognitive impairment had become so obvious it could no longer be ignored. However, indicators of quality end-of-life care for decedents, such as advance care planning and palliative care/hospice enrollment, were comparable to or exceeded published reports. Finally, although there was greater use of dementia specialists for diagnosis and greater involvement of these specialists in the year after diagnosis, the sustained high volume of outpatient visits coupled with increases in acute care use present opportunities for better care coordination and integration of palliative care principles earlier in the illness trajectory. 53 Efforts to improve ADRD detection and care in this health system and elsewhere must be grounded in generating the much-needed real-world evidence regarding the value of earlier diagnosis for multiple stakeholders. This work is supported by funding from the Kaiser Permanente Southern California Care Improvement Research Team to Dr. Nguyen. Clinical leaders within the health system and who are also co-authors, participated in the design and conduct of the study, interpretation of the data, preparation, review, approval, and decision to submit the manuscript for publication. The authors thank the patients of Kaiser Permanente for helping to improve care through the use of information collected through our electronic health record system. Dr. Nguyen receives funding from the National Institutes of Health Alzheimer's disease facts and figures Screening for cognitive impairment in older adults: uS Preventive Services Task Force Recommendation Statement Caring for patients with dementia: how good is the quality of care? 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