Faculty Bibliography

PURPOSE OF THE STUDY: Cognitive impairment (CI) is one of several factors known to influence hospitalization, hospital length of stay, and rehospitalization among older adults. Redesigning care delivery systems sensitive to the influence of CI may reduce acute care utilization while improving care quality. To develop a foundation of fundamental needs for health care redesign, we conducted focus groups with inpatient and outpatient providers to identify barriers, facilitators, and suggestions for improvements in care delivery for patients with CI. DESIGN AND METHODS: Focus group sessions were conducted with providers to identify their approach to caring for cognitively impaired hospitalized adults; obstacles and facilitators to providing this care; and suggestions for improving the care process. Using a thematic analysis, two reviewers analyzed these transcripts to develop codes and themes. RESULTS: Seven themes emerged from the focus group transcripts. These were: (1) reflections on serving the cognitively impaired population; (2) descriptions of perceived barriers to care; (3) strategies that improve or facilitate caring for hospitalized older adults; (4) the importance of fostering a hospital friendly to the needs of older adults; (5) the need for educating staff, patients, and caregivers; (6) the central role of good communication; and (7) steps needed to provide more effective care. IMPLICATIONS: Providing effective acute care services to older adults with CI is an important challenge in health care reform. An understanding derived from the perspective of multiple professional disciplines is an important first step. Future research will build on this preliminary study in developing new acute care models for patients with CI.

BACKGROUND: Medication non-adherence is common in Parkinson's disease (PD) and is associated with increased disability and healthcare costs. Individuals' beliefs regarding their medical conditions and treatments impact medication adherence. While instruments exist to measure patients' beliefs about medications in general, no such tool exists for PD. OBJECTIVES: Create an instrument eliciting medication beliefs of persons with PD; identify demographic and clinical characteristics associated with beliefs; and examine whether beliefs are associated with dopaminergic therapy adherence. METHODS: We developed the Parkinson's Disease Medication Beliefs Scale (PD-Rx) in four phases: focus groups of patients and caregivers to generate items, scale development, expert and patient revision of items, and a cross-sectional validation sample (n = 75). Adherence was calculated using two approaches incorporating self-reported medication lists. RESULTS: The PD-Rx consists of 11 items covering benefits and risks of PD pharmacotherapies. The scale covers motor improvement, current adverse effects, and future concerns. Higher scores indicate more positive beliefs. Internal consistency was acceptable (Cronbach's alpha = 0.67). Test-retest reliability was 0.47. Quality of life was associated with PD-Rx scores, and lower scores were associated with non-adherence. CONCLUSIONS: Negative beliefs about PD treatments are associated with lower quality of life and may be related to medication non-adherence. Further study of any causal relationship between beliefs and medication non-adherence in PD will inform the design of future patient-centered interventions to improve adherence.

Many countries have adopted national dementia plans to identify actions to address the growing Alzheimer's crisis. The enactment of the National Alzheimer's Project Act called for the creation of such a plan in the United States, and the first U.S. national Alzheimer's plan was released in 2012, with annual updates thereafter. As the release of the original Plan, efforts have been underway to implement its five goals, including identifying milestones required to meet the plan's biomedical research goal (goal 1). However, similar milestones have not been completed for the goals on care (goal 2) and support (goal 3). To advance this effort, the Alzheimer's Association convened a workgroup with expertise in clinical care and long-term services and supports, dementia care and support research, and public policy to identify key milestones necessary to achieve goals 2 and 3. This report outlines the workgroup's activities and presents the workgroup's recommended milestones.

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