Faculty Bibliography

Though abnormalities of visuospatial function occur in Parkinson's disease, the impact of such deficits on functional independence and psychological wellbeing has been historically under- recognized, and effective treatments for this impairment are unknown. These symptoms can be encountered at any stage of the disease, affecting many activities of daily living, and negatively influencing mood, self-efficacy, independence, and overall quality of life. Furthermore, visuospatial dysfunction has been recently linked to gait impairment and falls, symptoms that are known to be poor prognostic factors. Here, we aim to present an original modality of neurorehabilitation designed to address visuospatial dysfunction and related symptoms in Parkinson's disease, known as "Art Therapy". Art creation relies on sophisticated neurologic mechanisms including shape recognition, motion perception, sensory-motor integration, abstraction, and eye-hand coordination. Furthermore, art therapy may enable subjects with disability to understand their emotions and express them through artistic creation and creative thinking, thus promoting self-awareness, relaxation, confidence and self-efficacy. The potential impact of this intervention on visuospatial dysfunction will be assessed by means of combined clinical, behavioral, gait kinematic, neuroimaging and eye tracking analyses. Potential favorable outcomes may drive further trials validating this novel paradigm of neurorehabilitation.

Parkinson's disease (PD) is a complex, multisymptom, neurodegenerative disease affecting primarily older adults. With progression, many individuals become homebound and removed from coordinated, expert care, resulting in excess morbidity, mortality, and healthcare expenditures in acute care settings and institutions. Home visit care models have achieved the triple aim of improving individual and population health while reducing costs in many frail, community-dwelling geriatric cohorts. This study details a novel, interdisciplinary home visit program specifically designed for individuals with PD and related disorders and their family caregivers built upon best practice principles in the care of multimorbid older adults. At each quarterly home visit, a movement disorders-trained neurologist, social worker, and nurse work in parallel with the individual and caregiver to complete a history, physical, detailed medication reconciliation, psychosocial needs assessment, and home safety assessment. A comprehensive, person-centered plan is agreed upon, referrals to community resources are made, standardized documentation is shared, and follow-up communication is instituted. In the first 2 years, 272 visits were conducted with 85 individuals who represent one of the oldest, most disabled PD populations reported. Satisfaction with and retention in the program were high. This study represents the first translation of the success of interdisciplinary and home-based geriatric care models to a population with a specific neurological disease. Preliminary evidence supports the need for such programs in vulnerable populations. Future studies will prospectively assess person-centered outcomes, the effect of using telemedicine on sustainability, and cost effectiveness.

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 become homebound, often losing access to neurologic care. This leads to a surge in emergency department visits and hospitalizations. Improving access to expert in-home care may improve quality of life. Design/Methods: PD patients meeting Medicare criteria for homebound status are eligible to receive quarterly home visits over 12 months. Each visit entails an evaluation by a movement disorders specialist, social worker, and nurse, including detailed history, physical examination, real-time medication reconciliation, psychosocial evaluation, and referral to in-home services. Quality of life (Neuro-QoL) is measured at Visits 1 and 4. Results: Out of 27 subjects enrolled, 26 have completed the study. At baseline, subjects' mean age is 81 years (SD 7.8); mean PD duration is 10 years; mean UPDRS total score is 65 (SD 20). Of the 26 subjects completing Visit 4, total UPDRS increased by a mean of 12 (SD 10.7), yet quality of life improved in 7/8 Neuro-QoL domains. Conclusions: We identified a unique population typically lost to clinical care and research-the elderly, homebound with advanced PD-and this is the first description of their progression over time. Despite the expected progression of functional and motor disability over one year, subjects reported improved quality of life since entering the HVP. Next steps include the implementation of a hybrid in-person/telehealth home visit model, inclusion of individuals with cognitive impairment in future studies, and comparison of outcomes with other advanced PD populations

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 develop and implement a novel, interdisciplinary, community based fitness training program for individuals living with Parkinson's disease (PD) that addresses the physical and psychosocial components of the disease process. Method: The Edmond J. Safra Parkinson's Wellness Program-NYC Bold Moves Walking Group consists of 8-10 individuals living with PD who train for the 1.4 mile walk at the annual Parkinson's Unity Walk in New York City's Central Park. Bold Moves was designed as a unique model of psychosocial and fitness collaboration co-led by an experienced triathlon trainer and a social worker. The program also includes an educational component by incorporating the training of a master of social work student. This 12-week training program incorporates fitness training education and technology, as well as addresses the emotional needs of participants. Each week participants meet for one 90-minute session, focusing on key components including: body awareness, mobility, strength and aerobic conditioning, confidence building, and group therapeutic support Results: Reaction to the program has been positive on both physical and psychosocial impact. Participants reported that they became more aware of how PD symptoms affect their daily activities both physically and emotionally. They have reported more confidence, fewer falls, symptom relief, and an overall improved sense of wellbeing in addition to improvements in balance, muscle tone, and body alignment. Participants report a greater frequency of aerobic activity between group sessions. Interdisciplinary collaboration with social work helped participants build a cohesive and supportive network environment. The therapeutic group modality provided support with emotional health, adaptation and management of the feelings that arise in relation to living with PD. Participants report improvements to self-esteem, mood, motivation, and anxiety. Discussion: This group exercise model motivates participants to exercise, through scheduled, goal-based targets while addressing issues related to the emotional adaption to PD. Participants developed confidence while exercising in a supportive group environment and had an opportunity to redefine their sense of self as athletes rather than patients. Further evaluation and expansion of the program is being considered

Background: Parkinson's disease (PD) has been identified as a chronic progressive illness that can present many challenges to the caregivers. As such, the therapeutic group process can be effective in supporting caregivers to manage the perceived burden and stress. It can also explore options and creative ways of caring for their spouse with PD. Aims: This study is an assessment of caregivers' perception in caring for their spouse with PD in the same household. Methods: The anonymous survey was completed by participants in a Parkinson's Care Partners' Support Group in an urban community based wellness program in the northeastern USA during 2012 - 2015. The purpose of the research was to identify the caregivers' perception of self-efficacy for self-management of their caregiver's responsibilities. Results: Survey data was obtained electronically via Qualtrics, from group participants. The sample includes 27 caregivers. Measurement scales showed good reliability. For ex., 6 items addressing thoughts and feelings experienced by caregivers showed a reliability of.855 and yielded a mean of 3.34 on a 5-point scale that ranged from Strongly Disagree to Strongly Agree (n=27). On another item, caregivers indicated that they often do not have the help they need in caring for the person with PD during anytime of the day or night or even in a crisis situation, with an average mean score of 2.09 on a 5-point scale that ranged from Never to Nearly Always. Discussion: Findings from the study include 1) an analysis of caregivers' perceptions of the types of care the person with PD required based on physical, cognitive and emotional functioning; 2) the type of care the caregivers felt they provided and their experience with care-giving; 3) aspects of life changes as a result of care-giving responsibilities; and 4) how caregivers thought the support group experience was helpful in increasing confidence in managing the care-giving responsibilities. Conclusion: This study indicated that the therapeutic group process is an effective intervention in supporting caregivers to manage the associated burden and stress in caring for their spouse with PD. The valuable intervention of mutual support helps caregivers (in their role) gain insight aimed at self-preservation, adaptation and self-efficacy. Future evaluations will assess the impact of experience on self-efficacy for self-management; participant satisfaction; and further replication of the program will be considered

Objective: The development of a dynamic, multimodal social work program for individuals, care partners and families living with Parkinson's disease Background: "They were talking a lot about symptoms-my tremor and my trouble walking-and what pills I could take. But no one was talking to me about how I felt. I felt like my world had fallen apart." - John S, Parkinson's patient Patients living with Parkinson's disease (PD) face a constantly evolving array of psychosocial impacts throughout the disease process. There is a need for dynamic resources that support emotional health and ongoing adaptation for patients and families to improve quality of life and outcomes. PD expert social workers are in a unique position to address ongoing psychosocial need with a multi-modal intervention model. Methods: This program was launched in a PD expert clinic with traditional social work service provision including assessment, counseling, education and resource referral for patients, care partners, couples and families. The program was expanded to include a community partnership to provide a robust Parkinson's wellness program with group based exercise, support and education opportunities. The program then developed a one-year training program for master of social work level students. The latest phase of expansion includes coordination of an interdisciplinary home visit program for advanced Parkinson's. Specialized therapeutic support groups for patients and for care partners are also provided. Within this program paradigm, social workers are valued members of the expert, interdisciplinary team and act as a communication hub for multimodal continuity of care. Results: The multimodal social work program has expanded from the clinical setting to encompass community partnerships, educational training and service provision to the homes of our most vulnerable patients. The program has been in high demand since its inception and has proven popular with patients, families and providers. Plans for expansion and evaluation include continued needs assessment, as well as program impact on quality of life, selfefficacy and ongoing adaptation to the disease process. Discussion: The multimodal model of social work care offers potential benefit in multiple domains of individual and systemic psychosocial need that affect quality of life and outcomes. This poster will demonstrate in graphics and narrative the development and growth of the social work multimodal program model

Objective: To increase the scale of a medical and community partnership model for the delivery of comprehensive Parkinson's Wellness programming. Background: In 2007, the Fresco Institute for Parkinson's and Movement Disorders at NYU Langone Medical Center launched a novel initiative with Jewish Community Center Manhattan to develop a comprehensive wellness program model designed specifically for the needs of individuals, care partners and families living with Parkinson's disease (PD). The program has been in high demand since its inception and has proven popular with patients, families and providers. Methods: An interdisciplinary team of medical and community professionals was formed to expand the scale of the program nationally. Top PD specialized clinics and high capacity Jewish Community Centers from around the USA were selected and evaluated for participation in program expansion. Multidisciplinary teams comprised of medical and community professionals from the selected locations participated in program training in New York. The program model is comprised of three group-based components- exercise, support, and education-designed to provide proactive tools to enhance well-being, improve quality of life and complement specialized medical care. These tools are provided within a PD educated, community hub with collaborative support from an expert PD clinic. The benefits of exercise and support are well established in Parkinson's disease and have been previously described. Results: The New York program was adapted first in Boston, MA, and in Rockville, MD, followed by Tampa, FL, and Chicago, IL, in partnership with an expert PD clinic and Jewish Community Center in each location. Enrollment, satisfaction with the program, and impact on social domains of the patients' and caregivers' quality of life are being tracked. Sufficient data on enrollment and impact of the programs are not yet available, but initial feedback is positive. Discussion: The program model offers multiple domains of potential benefit in the areas of physical and psychosocial health for patients, care partners and families. Preliminary data suggests that the program model is effective in fostering motivation for participation in programs that aid in physical and psychosocial adaptation to PD. Potential further study and expansion of the program is being considered. This poster will demonstrate in graphics and narrative the development and growth of this program model

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