IN-HOME-PDCaregivers: The effects of a combined home visit and peer mentoring intervention for caregivers of homebound individuals with advanced Parkinson's disease.

INTRODUCTION: Family caregivers of people with advanced Parkinson's Disease (PD) are at high risk of caregiver strain, which independently predicts adverse patient outcomes. We tested the effects of one year of interdisciplinary, telehealth-enhanced home visits (IN-HOME-PD) with 16 weeks of peer mentoring on caregiver strain compared with usual care. METHODS: We enrolled homebound people with advanced PD (PWPD) and their primary caregiver as IN-HOME-PD dyads. We trained experienced PD family caregivers as peer mentors. Dyads received four structured home visits focused on advanced symptom management, home safety, medications, and psychosocial needs. Starting at approximately four months, caregivers spoke weekly with a peer mentor for 16 weeks. We compared one-year change in caregiver strain (MCSI, range 0-72) with historical controls, analyzed intervention acceptability, and measured change in anxiety, depression, and self-efficacy. RESULTS: Longitudinally, IN-HOME-PD caregiver strain was unchanged (n = 51, 23.34 (SD 9.43) vs. 24.32 (9.72), p = 0.51) while that of controls worsened slightly (n = 154, 16.45 (10.33) vs. 17.97 (10.88), p = 0.01). Retention in peer mentoring was 88.2%. Both mentors and mentees rated 100% of mentoring calls useful, with mean satisfaction of 91/100 and 90/100, respectively. There were no clinically significant improvements in anxiety, depression, or self-efficacy. CONCLUSIONS: Interdisciplinary telehealth-enhanced home visits combined with peer mentoring mitigated the worsening strain observed in caregivers of less advanced individuals. Mentoring was met with high satisfaction. Future caregiver-led peer mentoring interventions are warranted given the growing, unmet needs of PD family caregivers. TRIAL REGISTRATION: NCT03189459.

IN-HOME-PD: The effects of longitudinal telehealth-enhanced interdisciplinary home visits on care and quality of life for homebound individuals with Parkinson's disease.

INTRODUCTION: Homebound individuals with advanced Parkinson's disease (PD) are underrepresented in research and care. We tested the impact of interdisciplinary, telehealth-enhanced home visits (IN-HOME-PD) on patient quality of life (QoL) compared with usual care. METHODS: Nonrandomized controlled trial of quarterly, structured, telehealth-enhanced interdisciplinary home visits focused on symptom management, home safety, medication reconciliation, and psychosocial needs (ClinicalTrials.gov NCT03189459). We enrolled homebound participants with advanced PD (Hoehn & Yahr (HY) stage ≥3). Usual care participants had ≥2 visits in the Parkinson's Outcomes Project (POP) registry. We compared within- and between-group one-year change in QoL using the Parkinson's Disease Questionnaire. RESULTS: Sixty-five individuals enrolled in IN-HOME-PD (32.3% women; mean age 78.9 (SD 7.6) years; 74.6% white; 78.5% HY ≥ 4) compared with 319 POP controls, with differences in age, race, and PD severity (37.9% women; mean age 70.1 (7.8) years; 96.2% white; 15.1% HY ≥ 4). Longitudinally, the intervention group's QoL remained unchanged (within-group p = 0.74, Cohen's d = 0.05) while QoL decreased over time in POP controls (p < 0.001, Cohen's d = 0.27). The difference favored the intervention (between-group p = 0.04). POP participants declined in 7/8 dimensions while IN-HOME-PD participants' bodily discomfort improved and hospice use and death at home-markers of goal-concordant care-far exceeded national data. CONCLUSIONS: Telehealth-enhanced home visits can stabilize and may improve the predicted QoL decline in advanced PD via continuity of care and facilitating goal-concordant care, particularly among diverse populations. Extrapolating features of this model may improve continuity of care and outcomes in advanced PD.

Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study.

BACKGROUND: Homebound individuals with advanced Parkinson disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. OBJECTIVE: The aim of this study was to test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. METHODS: This was a single-center, 16-week pilot study of caregiver peer mentoring nested within a year-long controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and postmentoring intervention at home visits 2 and 3. RESULTS: Enrollment and peer-mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were White, female spouses or partners of individuals with PD; mentors had a mean of 8.7 (SD 6.4) years of caregiving experience, and 33 mentors were matched with at least 1 mentee. CONCLUSIONS: This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. TRIAL REGISTRATION: ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/34750.

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care.

Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS; the most common phenotype of corticobasal degeneration) are tauopathies with a relentless course, usually starting in the mid-60s and leading to death after an average of 7 years. There is as yet no specific or disease-modifying treatment. Clinical deficits in PSP are numerous, involve the entire neuraxis, and present as several discrete phenotypes. They center on rigidity, bradykinesia, postural instability, gait freezing, supranuclear ocular motor impairment, dysarthria, dysphagia, incontinence, sleep disorders, frontal cognitive dysfunction, and a variety of behavioral changes. CBS presents with prominent and usually asymmetric dystonia, apraxia, myoclonus, pyramidal signs, and cortical sensory loss. The symptoms and deficits of PSP and CBS are amenable to a variety of treatment strategies but most physicians, including many neurologists, are reluctant to care for patients with these conditions because of unfamiliarity with their multiplicity of interacting symptoms and deficits. CurePSP, the organization devoted to support, research, and education for PSP and CBS, created its CurePSP Centers of Care network in North America in 2017 to improve patient access to clinical expertise and develop collaborations. The directors of the 25 centers have created this consensus document outlining best practices in the management of PSP and CBS. They formed a writing committee for each of 12 sub-topics. A 4-member Steering Committee collated and edited the contributions. The result was returned to the entire cohort of authors for further comments, which were considered for incorporation by the Steering Committee. The authors hope that this publication will serve as a convenient guide for all clinicians caring for patients with PSP and CBS and that it will improve care for patients with these devastating but manageable disorders.

Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial.

BACKGROUND: The current understanding of advanced Parkinson disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals with PD are disconnected from both care and research. A previous pilot study among older, multimorbid patients with advanced PD demonstrated the feasibility of interdisciplinary home visits to reach the target population, improve care quality, and potentially avoid institutionalization. OBJECTIVE: The aim of this study protocol is to investigate whether interdisciplinary home visits can prevent a decline in quality of life of patients with PD and prevent worsening of caregiver strain. The protocol also explores whether program costs are offset by savings in health care utilization and institutionalization compared with usual care. METHODS: In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn and Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over 1 year. The 1-year intervention is delivered by a nurse and a research coordinator, who travel to the home, and it is supported by a movement disorder specialist and social worker (both present by video). Each dyad is compared with age-, sex-, and Hoehn and Yahr stage-matched control dyads drawn from US participants in the longitudinal Parkinson's Outcome Project registry. The primary outcome measure is the change in patient quality of life between baseline and 1 year. Secondary outcome measures include changes in Hoehn and Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time to institutionalization or death. Intervention costs and changes in health care utilization will be analyzed in a budget impact analysis to explore the potential for model adaptation and dissemination. RESULTS: The protocol was funded in September 2017 and approved by the Rush Institutional Review Board in October 2017. Recruitment began in May 2018 and closed in November 2019 with 65 patient-caregiver dyads enrolled. All study visits have been completed, and analysis is underway. CONCLUSIONS: To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced PD and their caregivers. This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs. TRIAL REGISTRATION: ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/31690.

KICK OUT PD: Feasibility and quality of life in the pilot karate intervention to change kinematic outcomes in Parkinson's Disease.

BACKGROUND: Multiple exercise modalities and mindfulness activities are beneficial in Parkinson's Disease (PD). Karate is a martial art that combines aerobic and large-amplitude movements, balance and core training, and mindfulness, suggesting a potential benefit for individuals with PD from multiple perspectives. OBJECTIVE: To evaluate the feasibility of community-based Shotokan karate classes involving physical activity and mindfulness among individuals with mild- to moderate-stage PD, and to explore the effects of karate on objective and patient-reported outcomes. METHODS: We conducted a 10-week, unblinded trial of twice weekly, PD-specific karate classes. Feasibility was assessed by: dropout rates, adherence via attendance records, adverse effects and falls, and continued participation six months post-intervention. Participants completed pre- and post-intervention assessments of disease-related quality of life (Parkinson's Disease Questionnaire-8, PDQ-8), falls, and post-intervention assessment of change in overall wellbeing (Patient Global Impression of Change, PGIC), with exploratory measures of mobility using the Timed Up and Go (TUG), mood using the Hospital Anxiety and Depression Scale (HADS), and cognition using digit span forward and backward and the Symbol Digit Modalities Test (SDMT). RESULTS: Of 19 enrolled participants, 15 completed the study (79%). Among completers, mean adherence was 87% during the ten weeks of intervention, and 53% maintained karate participation six months later and endorsed sustained improvement, respectively. No adverse effects or change in fall frequency were detected. Among completers, 53% were women, and mean PD duration was 6 years (range 2-20). Quality of life improved to a clinically significant degree (PDQ-8: mean 25.3 (standard deviation (SD) 20.8) versus 19.3 (SD 19.6), p = 0.01, effect size 0.83). On the PGIC, 87% endorsed feeling moderately or considerably better. Mobility did not change significantly (TUG: 9.6 seconds (SD 2.23) versus 9.0 seconds (SD 1.89), p = 0.12, effect size 0.43), nor were there changes in overall physical activity, mood, or cognition (p = 0.35-0.92). CONCLUSIONS: In a small, 10-week, unblinded trial of community-based karate classes for individuals with mild and moderate PD, high adherence was noted. Quality of life and wellbeing improved significantly, without changes in exploratory outcomes of mobility or neuropsychological outcomes. The study was underpowered, particularly for the exploratory outcomes. Controlled and longitudinal investigation is warranted to confirm our pilot findings and explore the long-term effects and sustainability of karate in PD. TRIAL REGISTRATION: Clinicaltrials.gov: NCT03555695.

Novel Outreach Program and Practical Strategies for Patients with Parkinsonism in the COVID-19 Pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has upended daily life and neurologic care for most patients, including those with Parkinson's disease and parkinsonism. Disruptions to routine care, high volumes of patient and caregiver calls, and our patients' risk of infection and complications inspired a proactive COVID-19 outreach program. This program targets patients with advanced Parkinson's disease and related disorders, specifically those who are homebound, receiving or eligible for palliative care, and/or lacking support networks. We describe the program and practical strategies providers can implement to support wellbeing and successful telehealth uptake during this time of social isolation and gradual reopening.

Interdisciplinary palliative care for people with advanced Parkinson's disease: a view from the home.

BACKGROUND: Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers. METHODS: With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases. RESULTS: The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients. CONCLUSIONS: As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.