Reliability and Validity of SymTrak, a Multi-Domain Tool for Monitoring Symptoms of Older Adults with Multiple Chronic Conditions.

BACKGROUND: A reliable and valid clinically practical multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). OBJECTIVE: Assess internal consistency reliability, test-retest reliability, construct validity, and sensitivity to change for SymTrak. DESIGN AND PARTICIPANTS: Among 600 (200 patient-caregiver dyads, 200 patients without an identified caregiver) participants, SymTrak was telephone interviewer-administered at baseline and 3-month follow-up, and at 24 h post-baseline for assessing test-retest reliability in a random subsample of 180 (60 dyads, 60 individual patients) participants. MAIN MEASURES: Demographic questions, SymTrak, Health Utility Index Mark 3 (HUI3). KEY RESULTS: Exploratory factor analysis indicated a single dominant dimension for SymTrak items for both patients and caregivers. Coefficient alpha and 24-h test-retest reliability, respectively, were high for the 23-item SymTrak total score for both patient-reported (0.85; 0.87) and caregiver-reported (0.86; 0.91) scores. Construct validity was supported by monotone decreasing relationships between the mean of SymTrak total scores across the poor-to-excellent categories of physical and emotional general health, and by high correlations with HUI3 overall utility score, even after adjusting for demographic covariates (standardized linear regression coefficient = - 0.84 for patients; - 0.70 for caregivers). Three-month change in the SymTrak total score was sensitive to detecting criterion standard 3-month reliable change categories (Improved, Stable, Declined) in HUI3-based health-related quality of life, especially for caregiver-reported scores. CONCLUSIONS: SymTrak demonstrates good internal consistency and test-retest reliability, construct validity, and sensitivity to change over a 3-month period, supporting its use for monitoring symptoms for older adults with MCCs.

Development and Feasibility of SymTrak, aMulti-domain Tool for Monitoring Symptoms of Older Adults in Primary Care.

BACKGROUND: A clinically practical, brief, user-friendly, multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). OBJECTIVE: Develop and assess usability, administration time, and internal reliability of SymTrak. DESIGN AND PARTICIPANTS: Phase I: legacy instruments, content validity, analyses of existing data, focus groups (physicians, nurses, patients, informal caregivers), and Think Aloud interviews (patients, caregivers) were used to develop SymTrak. Phase II (pilot feasibility study): 81 (27 patient-caregiver dyads, 27 patients without an identified caregiver) participants were self-administered SymTrak in clinic. MAIN MEASURES: SymTrak and demographic questions. KEY RESULTS: Consistent themes emerged from phase I focus groups. Ambiguous wording was corrected with Think Aloud feedback. In phase II, patients and caregivers preferred circling words instead of numbers for item response options. SymTrak self-administration completion time in clinic was brief; mean was 2.4, 3.0, and 3.3 min for the finalized circlingwords version, respectively, for caregivers, dyadic patients, and patients without a caregiver; and the maximum was 6.2 min for any participant. Usability questionnaire ratings were high. Cronbach's alpha for the SymTrak 23-item total score was 0.86, 0.79, and 0.81 for caregivers, dyadic patients, and patients without a caregiver, respectively. CONCLUSIONS: SymTrak demonstrates content validity, positive qualitative findings, high perceived usability, brief self-administered completion time, and good internal reliability.

Patient and Caregiver Assessment of the Benefits From the Clinical Use of Amyloid PET Imaging.

INTRODUCTION: Few studies to date have explored patient and caregiver views on the clinical use of amyloid positron emission tomography (PET). METHODS: A 7-item questionnaire assessing patient and caregiver views (510 total respondents) toward amyloid PET imaging was advertised broadly through alz.org/trialmatch. RESULTS: We received 510 unique responses from 48 US states, 2 Canadian provinces, the Dominican Republic, and Greece. Both patients and caregivers indicated that they would want to receive amyloid imaging if offered the opportunity. Over 88% of respondents had a positive response (∼10% with neutral and 2% with negative responses) to whether amyloid PET should be offered routinely and be reimbursed. Such information was felt to be useful for long-term legal, financial, and health care planning. Respondents identifying with early age cognitive decline (younger than 65 y) were more likely to explore options for disability insurance (P=0.03). Responders from the Midwest were more likely to utilize information from amyloid imaging for legal planning (P=0.02), disability insurance (P=0.02), and life insurance (P=0.04) than other US regions. DISCUSSION: Patients and caregivers supported the use of amyloid PET imaging in clinical practice and felt that the information would provide significant benefits particularly in terms of future planning.

Targeting Functional Decline in Alzheimer Disease: A Randomized Trial.

BACKGROUND: Alzheimer disease results in progressive functional decline, leading to loss of independence. OBJECTIVE: To determine whether collaborative care plus 2 years of home-based occupational therapy delays functional decline. DESIGN: Randomized, controlled clinical trial. (ClinicalTrials.gov: NCT01314950). SETTING: Urban public health system. PATIENTS: 180 community-dwelling participants with Alzheimer disease and their informal caregivers. INTERVENTION: All participants received collaborative care for dementia. Patients in the intervention group also received in-home occupational therapy delivered in 24 sessions over 2 years. MEASUREMENTS: The primary outcome measure was the Alzheimer's Disease Cooperative Study Group Activities of Daily Living Scale (ADCS ADL); performance-based measures included the Short Physical Performance Battery (SPPB) and Short Portable Sarcopenia Measure (SPSM). RESULTS: At baseline, clinical characteristics did not differ significantly between groups; the mean Mini-Mental State Examination score for both groups was 19 (SD, 7). The intervention group received a median of 18 home visits from the study occupational therapists. In both groups, ADCS ADL scores declined over 24 months. At the primary end point of 24 months, ADCS ADL scores did not differ between groups (mean difference, 2.34 [95% CI, -5.27 to 9.96]). We also could not definitively demonstrate between-group differences in mean SPPB or SPSM values. LIMITATION: The results of this trial are indeterminate and do not rule out potential clinically important effects of the intervention. CONCLUSION: The authors could not definitively demonstrate whether the addition of 2 years of in-home occupational therapy to a collaborative care management model slowed the rate of functional decline among persons with Alzheimer disease. This trial underscores the burden undertaken by caregivers as they provide care for family members with Alzheimer disease and the difficulty in slowing functional decline. PRIMARY FUNDING SOURCE: National Institute on Aging.

Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial.

CONTEXT: Most older adults with dementia will be cared for by primary care physicians, but the primary care practice environment presents important challenges to providing quality care. OBJECTIVE: To test the effectiveness of a collaborative care model to improve the quality of care for patients with Alzheimer disease. DESIGN, SETTING, AND PATIENTS: Controlled clinical trial of 153 older adults with Alzheimer disease and their caregivers who were randomized by physician to receive collaborative care management (n = 84) or augmented usual care (n = 69) at primary care practices within 2 US university-affiliated health care systems from January 2002 through August 2004. Eligible patients (identified via screening or medical record) met diagnostic criteria for Alzheimer disease and had a self-identified caregiver. INTERVENTION: Intervention patients received 1 year of care management by an interdisciplinary team led by an advanced practice nurse working with the patient's family caregiver and integrated within primary care. The team used standard protocols to initiate treatment and identify, monitor, and treat behavioral and psychological symptoms of dementia, stressing nonpharmacological management. MAIN OUTCOME MEASURES: Neuropsychiatric Inventory (NPI) administered at baseline and at 6, 12, and 18 months. Secondary outcomes included the Cornell Scale for Depression in Dementia (CSDD), cognition, activities of daily living, resource use, and caregiver's depression severity. RESULTS: Initiated by caregivers' reports, 89% of intervention patients triggered at least 1 protocol for behavioral and psychological symptoms of dementia with a mean of 4 per patient from a total of 8 possible protocols. Intervention patients were more likely to receive cholinesterase inhibitors (79.8% vs 55.1%; P = .002) and antidepressants (45.2% vs 27.5%; P = .03). Intervention patients had significantly fewer behavioral and psychological symptoms of dementia as measured by the total NPI score at 12 months (mean difference, -5.6; P = .01) and at 18 months (mean difference, -5.4; P = .01). Intervention caregivers also reported significant improvements in distress as measured by the caregiver NPI at 12 months; at 18 months, caregivers showed improvement in depression as measured by the Patient Health Questionnaire-9. No group differences were found on the CSDD, cognition, activities of daily living, or on rates of hospitalization, nursing home placement, or death. CONCLUSIONS: Collaborative care for the treatment of Alzheimer disease resulted in significant improvement in the quality of care and in behavioral and psychological symptoms of dementia among primary care patients and their caregivers. These improvements were achieved without significantly increasing the use of antipsychotics or sedative-hypnotics. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00246896.

Response to depression treatment in the Aging Brain Care Medical Home model.

OBJECTIVE: To evaluate the effect of the Aging Brain Care (ABC) Medical Home program's depression module on patients' depression severity measurement over time. DESIGN: Retrospective chart review. SETTING: Public hospital system. PARTICIPANTS: Patients enrolled in the ABC Medical Home program between October 1, 2012 and March 31, 2014. METHODS: The response of 773 enrolled patients who had multiple patient health questionnaire-9 (PHQ-9) scores recorded in the ABC Medical Home program's depression care protocol was evaluated. Repeatedly measured PHQ-9 change scores were the dependent variables in the mixed effects models, and demographic and comorbid medical conditions were tested as potential independent variables while including random effects for time and intercept. RESULTS: Among those patients with baseline PHQ-9 scores >10, there was a significant decrease in PHQ-9 scores over time (P<0.001); however, the effect differed by gender (P=0.015). On average, women's scores (4.5 point drop at 1 month) improved faster than men's scores (1 point drop at 1 month). Moreover, both men and women had a predicted drop of 7 points (>50% decline from baseline) on the PHQ-9 at 6 months. CONCLUSION: These analyses demonstrate evidence for the sustained effectiveness of the ABC Medical Home program at inducing depression remission outcomes while employing clinical staff who required less formal training than earlier clinical trials.

Implementing a screening and diagnosis program for dementia in primary care.

BACKGROUND: Primary care physicians are positioned to provide early recognition and treatment of dementia. We evaluated the feasibility and utility of a comprehensive screening and diagnosis program for dementia in primary care. METHODS: We screened individuals aged 65 and older attending 7 urban and racially diverse primary care practices in Indianapolis. Dementia was diagnosed according to International Classification of Diseases (ICD)-10 criteria by an expert panel using the results of neuropsychologic testing and information collected from patients, caregivers, and medical records. RESULTS: Among 3,340 patients screened, 434 scored positive but only 227 would agree to a formal diagnostic assessment. Among those who completed the diagnostic assessment, 47% were diagnosed with dementia, 33% had cognitive impairment-no dementia (CIND), and 20% were considered to have no cognitive deficit. The overall estimated prevalence of dementia was 6.0% (95% confidence interval (CI) 5.5% to 6.6%) and the overall estimate of the program cost was $128 per patient screened for dementia and $3,983 per patient diagnosed with dementia. Only 19% of patients with confirmed dementia diagnosis had documentation of dementia in their medical record. CONCLUSIONS: Dementia is common and undiagnosed in primary care. Screening instruments alone have insufficient specificity to establish a valid diagnosis of dementia when used in a comprehensive screening program; these results may not be generalized to older adults presenting with cognitive complaints. Multiple health system and patient-level factors present barriers to this formal assessment and thus render the current standard of care for dementia diagnosis impractical in primary care settings.

The Aging Brain Care Medical Home: Preliminary Data.

The Aging Brain Care (ABC) Medical Home aims to improve the care, health outcomes, and medical costs of Medicare beneficiaries with dementia or depression across central Indiana. This population health management program, funded by the Centers for Medicare and Medicaid Services Innovation Center, expanded an existing collaborative dementia and depression care program to serve 1,650 older adults in a local safety-net hospital system. During the first year, 20 full-time clinical staff were hired, trained, and deployed to deliver a collaborative care intervention. In the first 18 months, an average of 13 visits was provided per person. Thirty percent of the sample had a diagnosis of dementia, and 77% had a diagnosis of depression. Sixty-six percent of participants with high depression scores (Patient Health Questionnaire-9 score ≥14) had at least a 50% reduction in their depressive symptoms. Fifty-one percent of caregivers of individuals with dementia had at least a 50% reduction in caregiver stress symptoms (measured by the Healthy Aging Brain Care Monitor-Caregiver Version). After 18 months, the ABC Medical Home has demonstrated progress toward improving the health of older adults with dementia and depression. Scalable and practical models like this show initial promise for answering the challenges posed by the nation's rapidly aging population.

Prevalence Rates of Major Depressive Disorders: The Effects of Varying the Diagnostic Criteria in an Older Primary Care Population.

Patients age 60 years and older (N = 3,767) were screened for depression using the Center for Epidemiological Studies Depression Scale (CES-D). A random sample of patients scoring ≥ 16 on the CES-D (n = 44) and of patients scoring < 16 (n = 81) were recruited to complete a structured psychiatric interview. The estimated prevalence of major depressive disorder (MDD), using a clinically derived diagnosis with the "etiological" method, was 1.78%. When a computer-generated algorithm for MDD using the "inclusive" method for counting somatic symptoms was applied, the estimated prevalence for MDD rose to 5.84%. All subjects with MDD diagnosed by any method had significantly higher scores on the Sickness Impact Profile (SIP), compared with nondepressed subjects.

Alzheimer's disease multiple intervention trial (ADMIT): study protocol for a randomized controlled clinical trial.

BACKGROUND: Given the current lack of disease-modifying therapies, it is important to explore new models of longitudinal care for older adults with dementia that focus on improving quality of life and delaying functional decline. In a previous clinical trial, we demonstrated that collaborative care for Alzheimer's disease reduces patients' neuropsychiatric symptoms as well as caregiver stress. However, these improvements in quality of life were not associated with delays in subjects' functional decline. TRIAL DESIGN: Parallel randomized controlled clinical trial with 1:1 allocation. PARTICIPANTS: A total of 180 community-dwelling patients aged ≥45 years who are diagnosed with possible or probable Alzheimer's disease; subjects must also have a caregiver willing to participate in the study and be willing to accept home visits. Subjects and their caregivers are enrolled from the primary care and geriatric medicine practices of an urban public health system serving Indianapolis, Indiana, USA. INTERVENTIONS: All patients receive best practices primary care including collaborative care by a dementia care manager over two years; this best practices primary care program represents the local adaptation and implementation of our prior collaborative care intervention in the urban public health system. Intervention patients also receive in-home occupational therapy delivered in twenty-four sessions over two years in addition to best practices primary care. The focus of the occupational therapy intervention is delaying functional decline and helping both subjects and caregivers adapt to functional impairments. The in-home sessions are tailored to the specific needs and goals of each patient-caregiver dyad; these needs are expected to change over the course of the study. OBJECTIVE: To determine whether best practices primary care plus home-based occupational therapy delays functional decline among patients with Alzheimer's disease compared to subjects treated in the control group. OUTCOMES: The primary outcome is the Alzheimer's Disease Cooperative Studies Group Activities of Daily Living Scale; secondary outcome measures are two performance-based measures including the Short Physical Performance Battery and Short Portable Sarcopenia Measure. Outcome assessments for both the caregiver-reported scale and subjects' physical performance scales are completed in the subject's home. RANDOMIZATION: Eligible patient-care giver dyads will be stratified by clinic type and block randomized with a computer developed randomization scheme using a 1:1 allocation ratio. BLINDING: Single blinded. Research assistants completing the outcome assessments were blinded to the subjects' treatment group. TRIAL STATUS: Ongoing CLINICALTRIAL.GOV IDENTIFIER: NCT01314950; date of completed registration 10 March 2011; date first patient randomized 9 March 2011.

Caregiver and noncaregiver attitudes toward dementia screening.

OBJECTIVES: To compare attitudes toward dementia screening of older adults with and without an experience of dementia caregiving. DESIGN: A cross-sectional study. SETTING: Primary care clinics in Indianapolis, Indiana. PARTICIPANTS: Eighty-one participants with dementia caregiving experience (CG) and a random sample of 125 participants without dementia caregiving experience (NCG). MEASUREMENTS: Attitudes of dementia screening, including acceptance of dementia screening and its perceived harms and benefits, as determined according to the Perceptions Regarding Investigational Screening for Memory in Primary Care questionnaire. RESULTS: After adjusting for age, race, sex, and education, CGs had a lower dementia screening acceptance mean score (53.9 vs 60.6; P=.03) and a higher perceived suffering score (61.6 vs 55.9, P=.04) than NCGs, but there were no differences in perceived benefits of dementia screening (72.8 vs 69.0; P=.50), perceived stigma (32.9 vs 37.5; P=.12), and perceived negative effect on independence (47.6 vs 54.0; P=.20). The top three barriers to screening identified by both groups were emotional suffering by the family (86% of CGs and 75% of NCGs), loss of driving privileges (75% of CGs and 78% of NCGs), and becoming depressed (64% of CGs and 43% of NCGs). CONCLUSION: The experience of being a dementia caregiver may influence one's own attitude about accepting dementia screening for oneself.