Faculty Bibliography

Freezing of gait (FOG) is 'an episodic inability to generate effective stepping in the absence of any known cause other than parkinsonism or high level gait disorders'. FOG is one of the most disabling symptoms in Parkinson's disease, especially in its more advanced stages. Early recognition is important as FOG is related to higher fall risk and poorer prognosis. Although specific treatments are still elusive, there have been recent advances in the development of new therapeutic approaches. The aim of this review is to present the latest knowledge regarding the phenomenology, pathogenesis, diagnostic assessment and conventional treatment of FOG in Parkinson's disease. A review of the evidence supporting noninvasive brain stimulation will follow to highlight the potential of these strategies.

BACKGROUND: Low health literacy (HL) indicates a limited ability to understand and use basic information to make appropriate healthcare decisions. While low HL is associated with higher morbidity, mortality, and healthcare costs in multiple chronic conditions, little is known about HL and its associations in Parkinson's disease (PD). METHODS: Cross-sectional study of non-demented adults with PD participating in the National Parkinson Foundation Parkinson's Outcomes Project at the University of Pennsylvania. Subjects were administered two brief HL assessments-the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF), a word-recognition test, and the Newest Vital Sign (NVS), a test of literacy, numeracy and understanding of health information-as well as demographic and clinical questionnaires. Adverse outcomes included falls in the 3 months preceding the study visit, and hospital admissions, emergency room visits, infections, or injuries in the preceding year. Caregiver burden was measured using the Multidimensional Caregiver Strain Index. RESULTS: 168 subjects completed both HL screens (mean 65.8 years, 65.5% male, 65.2% Hoehn & Yahr Stage 2). Using the REALM-SF, 97.6% of subjects had adequate HL. Using the NVS, however, 29.8% had low HL, which was associated with older age, lower education, male gender, greater disease severity, and poorer cognition. Low HL was associated with hospital admission and increased caregiver burden. CONCLUSIONS: Low HL is common and associated with greater caregiver burden and a higher likelihood of hospitalization in patients with PD. Since HL is associated with both disease severity and adverse outcomes, it may be an important, modifiable contributor to morbidity.

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

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

In recent years, the need for additional neurologists and neurologic expertise in many low- and middle-income countries (LMIC) has become more apparent. Many organizations are committed to this unmet need, but the scope of the problem remains mostly underappreciated. Neurologists may be skeptical about their value in resource-limited settings, yet we are critically needed and can have a marked effect. International experiences, however, must be carried out in ethical, informed, and sustainable ways in tandem with local health care providers when possible. We present a brief overview of critical issues in global neurology, the importance of focusing on benefits to the LMIC, and options for volunteer opportunities in clinical service, education, research, and disaster relief. Finally, we offer practical pointers and resources for planning these experiences.

AS RESEARCHERS CONTINUE TO ILLUMINATE THE COMPLEXITIES OF NEUROLOGIC DISORDERS AND THEIR MANAGEMENT, THE CLINICIAN FACES AN EQUALLY INTENSIFYING BURDEN: how to communicate these advances effectively to patients. Health literacy (HL) refers to a person's ability to find, comprehend, and use basic information and resources in order to make appropriate decisions related to his or her health. We describe the first study of low HL prevalence using a validated measure in a cohort of adult neurology outpatients without dementia. Of 201 subjects, 20.5% had low HL and 26% were unable to name any of their medications. In a multivariate regression model controlling for demographic and clinical factors, low HL was associated with lower education, greater disease duration, each 1-point decrease in the Folstein Mini-Mental State Examination, and the presence of a caregiver. As clinicians, we must incorporate specific communication and patient education strategies into our daily practice to truly optimize our patients' care.