Faculty Bibliography

Objective: 1) To demonstrate the feasibility of an interdisciplinary home visit program (HVP) for advanced Parkinson's Disease (PD) providing expert, interdisciplinary care directly to homebound patients; 2) to test whether the HVP improves patient quality of life despite disease progression. Background: As PD progresses, symptoms increase, quality of life declines, and individuals may lose access to neurologic care, becoming homebound. This leads to a surge in emergency department visits and hospitalizations. Improving access to expert in-home care may improve quality of life and minimize acute healthcare utilization. Methods: PD patients treated at The Fresco Institute for Parkinson's and Movement Disorders who meet Medicare criteria for homebound status are eligible to receive four quarterly home visits over 12 months. Each visit entails an evaluation by a movement disorders specialist, social worker, and nurse, including detailed history of symptoms, falls, and healthcare utilization; physical examination including the UPDRS; medication reconciliation; psychosocial evaluation and follow-up; and referral to in-home services. Quality of life (Neuro-QoL) is measured at Visits 1 and 4. Results: We have enrolled 26 subjects to date; 65% have completed 3 and 38% have completed 4 visits. At baseline, subjects' mean age is 81 years (SD 8); mean PD duration is 10 years (SD 6); mean UPDRS total score is 65 (SD 20, range 35-107). In the 12 months prior to enrollment, 48% had been hospitalized; 40% had visited an ED. Of the 10 subjects completing Visit 4, total UPDRS increased by a mean of 13 (SD 9), yet quality of life improved in 9/9 Neuro-QoL domains. Preliminary analysis of the first 74 visits shows no change in the rate of acute healthcare utilization between the 12 months preceding and time since HVP entry (p=0.59). Conclusions: Despite the expected progression of functional and motor disability over one year, subjects report improved quality of life since entering the HVP. No difference in acute healthcare utilization has yet been observed. We are in the process of assessing medication errors, adherence, and caregiver strain in this understudied population, with the aim of expanding the HVP as a novel model of care in the future. Previously Presented: The design and interim analysis of the HVP model was previously presented at the International Congress of Parkinson's and Movement Disorders 2015 and 2016, respectively

Objective: To determine the prevalence of low health literacy among caregivers of community-dwelling individuals with Parkinson's Disease (PD). Background: Low health literacy (HL) indicates a limited ability to understand and apply basic information to make appropriate healthcare decisions. Previously, we reported that nearly 30% of non-demented, community-dwelling individuals with PD had low HL, which was associated with both increased caregiver burden and hospitalization rates. The HL of caregivers, however, has only begun to be explored in other, non-PD cohorts, and is disheartening. In PD particularly, caregivers with adequate HL may serve as a safety net for vulnerable patients, assisting with medication adherence and health-related activities. Design/Methods: Cross-sectional study of caregivers of communitydwelling individuals with PD at two urban, academic referral centers. Individuals presenting for a clinical visit for PD were asked to participate in a study of HL and medication beliefs, and if available, self-identifying caregivers were asked to participate. Both patients and caregivers completed brief demographic questionnaires as well as the Newest Vital Sign, a validated 6-item screening instrument for HL, where 0-3 points indicates low HL and 4-6 points indicates adequate HL. Results: 103 patient-caregiver dyads participated. Caregivers had a mean age of 65 (SD 9), 72% had a college degree or higher, and 72% were women. Paid caregivers constituted less than 2% of our sample. Low HL was detected in 23% of patients and 14% of caregivers, respectively, with low concordance between pairs (agreement 73%, kappa=0.1, p=0.1). There was no significant association between level of education and HL in either patients or caregivers. Among patients with low HL (n=24), 21% also had a caregiver with low HL. Conclusion: Low HL is common in this sample of PD caregivers and patients despite high levels of education. In order to best educate and address the concerns of PD patients and families, we must recognize the prevalence and consequences of low HL. (Figure presented)

Objective: 1) To describe the role of social workers in managing the care coordination of homebound patients with advanced Parkinson's disease (PD); 2) to demonstrate whether social workers increase access to needed services and 3); to determine whether multiple visits have added value. Background: As PD progresses, the burden of motor and nonmotor symptoms as well as other comorbidities increases, eventually leading to a homebound state. Patients lose access to many essential services, resulting in reduced quality of life, hospitalization, and greater care partner burden. Homebound patients are eligible to participate in the Interdisciplinary Home Visit Program (HVP) at the Fresco Institute for Parkinson's and Movement Disorders. Visits include cross-discipline evaluations. The social worker's role is to identify unmet needs, provide diagnosis-specific education, counsel the patient and care partner, provide crucial resource referral, and coordinate care following each visit to ensure patients are connected to services. The value of multiple visits is unknown. Methods: We examined social work effort and dyad need by the number and type of referrals delivered through the HVP caring for the first 26 enrolled patients. We collected data across multiple visits to determine the value of repeat visits. "Referrals" here are defined as a successful connection to a referred service. Results: We observed a mean referral rate of 2.69 for the first visit. Although referral numbers decreased at each visit, the need for new referrals continued to be identified (0.5 referrals at the fourth visit). Referrals were diverse in type but specific types were frequent across patients: physical therapy - 73%; speech therapy - 58%; psychotherapy - 54%; home safety assessment - 27%; and psychiatry - 15%. Other referrals included support group, visiting primary care physician, medical alert system, home health care, elder care attorneys, and assistive devices. Conclusions: Homebound patients with advanced PD are in need of a variety of referrals to improve care. Through repeated social work assessments, new needs continue to be identified. Follow up home visits provide the social worker with the opportunity to facilitate continued assessment, connections to new resources, reinforce previously identified unmet needs, and provide supportive counseling that adapts to the patient and family's evolving circumstances as PD progresses

Background: Medication errors including non-adherence are independently associated with increased morbidity and mortality in the elderly population. In the USA, medication errors are estimated to increase healthcare costs by over $170 billion annually. In Parkinson's disease (PD) specifically, medication non-adherence directly increases disability and healthcare costs. When PD progresses and patients become homebound, office-based medication reconciliation is not possible and errors may go undetected. Objectives: To examine the number and types of medication errors detected by a registered nurse during interdisciplinary home visits for patients with advanced PD. Methods: We defined medication discrepancy errors as errors of dose, frequency, strength, omission, and commission. We compared provider-documented prescriptions with the patient- or caregiver- administered regimen for 26 subjects completing at least one home visit (and up to 4) during a one-year period of quarterly home visits. Results: Among 26 subjects, 11 subjects (42.3%) had completed four visits. In total, 54 errors were detected across 78 visits (0.69 detected errors per visit), with a median of 1 error per subject (range 0-9). The most common types of detected errors were errors of commission (35%) in which the subject was taking a medication not known to the provider or which they were instructed to discontinue, followed by errors of frequency (28%) and omission (24%). Conclusion: Medication errors are frequent among advanced PD patients and are ongoing even with medication reconciliation efforts. To our knowledge, this is the first study documenting the prevalence of medication errors in homebound patients with advanced PD and supports the value of a home visit program in advanced PD. This abstract has previously been presented at the 20th International Congress of Parkinson's and Movement Disorders on June 20th, 2016

Depression is common in nursing facility residents. Depression data obtained using the Minimum Data Set (MDS) 3.0 offer opportunities for improving diagnostic accuracy and care quality. How best to integrate MDS 3.0 and other data into quality improvement (QI) activity is untested. The objective was to increase nursing home (NH) capability in using QI processes and to improve depression assessment and management through focused mentorship and team building. This was a 6-month intervention with five components: facilitated collection of MDS 3.0 nine-item Patient Health Questionnaire (PHQ-9) and medication data for diagnostic interpretation; education and modeling on QI approaches, team building, and nonpharmacological depression care; mentored team meetings; educational webinars; and technical assistance. PHQ-9 and medication data were collected at baseline and 6 and 9 months. Progress was measured using team participation measures, attitude and care process self-appraisal, mentor assessments, and resident depression outcomes. Five NHs established interprofessional teams that included nursing (44.1%), social work (20.6%), physicians (8.8%), and other disciplines (26.5%). Members participated in 61% of eight offered educational meetings (three onsite mentored team meetings and five webinars). Competency self-ratings improved on four depression care measures (P = .05 to <.001). Mentors observed improvement in team process and enthusiasm during team meetings. For 336 residents with PHQ-9 and medication data, depression scores did not change while medication use declined, from 37.2% of residents at baseline to 31.0% at 9 months (P < .001). This structured mentoring program improved care processes, achieved medication reductions, and was well received. Application to other NH-prevalent syndromes is possible.

OBJECTIVES: To compare the effectiveness and costs of telephone-only approach to in-person plus telephone for delivering an evidence-based, coordinated care management program for dementia. METHODS: We randomized 151 patient-caregiver dyads from an underserved predominantly Latino community to two arms that shared a care management protocol but implemented in different formats: in-person visits at home and/or in the community plus telephone and mail, versus telephone and mail only. We compared between-arm caregiver burden and care-recipient problem behaviors (primary outcomes) and patient-caregiver dyad retention, care quality, health care utilization, and costs (secondary outcomes) at 6- and 12-months follow-up. RESULTS: Care quality improved substantially over time in both arms. Caregiver burden, care-recipient problem behaviors, retention, and health care utilization did not differ across arms but the in-person program cost more to deliver. DISCUSSION: Dementia care quality improved regardless of how care management was delivered; large differences in effectiveness or cost offsets were not detected.

OBJECTIVES: To characterize caregiver strain, depressive symptoms, and self-efficacy for managing dementia-related problems and the relationship between these and referring provider type. DESIGN: Cross-sectional observational cohort. SETTING: Urban academic medical center. PARTICIPANTS: Caregivers of community-dwelling adults with dementia referred to a dementia care management program. MEASUREMENTS: Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves; the Modified Caregiver Strain Index; the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress; and a nine-item caregiver self-efficacy scale developed for the study. RESULTS: Of 307 patient-caregiver dyads surveyed over a 1-year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed that the individual's provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of individuals referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for an individual with more-severe behavioral symptoms. CONCLUSION: Most caregivers perceived inadequate support from the individual's provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of individuals with dementia and their caregivers.

Improving the quality, comprehensiveness, and coordination of health care for people with dementia is a primary goal of the National Alzheimer's Plan. In this article, the key principles of high-quality dementia care for nonspecialist clinicians and health care leaders are synthesized, a framework for operationalizing its components is presented, and simple steps for developing dementia-capable health care systems are offered.

INTRODUCTION: The number of people in the United States living with dementia is projected to rise to over 7.1 million in the next 12 years, representing a 40% increase from current levels. This anticipated "dementia tsunami" has led to a recent state and national policy emphasis on early detection, improved care quality, reduced caregiver burden, and increased access to care. The ability to achieve these objectives is limited by few dementia specialists in rural and small communities and the challenges of travel to and within congested urban regions for dementia patients and their caregivers. Telemedicine is one such means for responding to this lack of access to subspecialty assessment and care. We describe our early experiences with this technology applied to neuropsychological assessments, with data from 31 patients. METHODS: As part of an interdisciplinary dementia care demonstration project, clinical video teleconferencing provides real-time high resolution video interactions between dementia subspecialists in a major metropolitan medical center and patients in 3 outlying clinics located 180, 150, and 100 miles away. Comprehensive neuropsychological assessments, designed to address referral questions related to neurocognitive disorders via clinical video teleconferencing, are conducted as one component of interdisciplinary care. OUTCOMES: Eighty-seven percent of patients referred for neuropsychological assessment had an inaccurate neurocognitive diagnosis at the time of referral. Unmet and unrecognized mental health treatment needs were identified in over 77% of patients. In addition, acceptance was good for patients, caregivers, and clinicians. DISCUSSION: Teleneuropsychology is proving to be an excellent resource for clarifying cognitive and psychiatric diagnoses, and integrating individual strengths, weaknesses, and preferences into treatment and care plans used by other health care providers, patients, and caregivers.