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.

Soluble urokinase-type plasminogen activator receptor (suPAR) is elevated in caregivers of patients with parkinsonism.

Caregivers are integral to the care of those with neurological disorders such as Parkinson's Disease (PD), but are often burdened by stress, anxiety, and depression. Previous research has suggested that the foundation of such stress is low-grade systemic inflammation, as evidenced by increased interleukin 6 (IL-6) and C-reactive protein (CRP) levels. Soluble urokinase-type plasminogen activator receptor (suPAR) is a kidney disease risk factor and marker of chronic inflammation that integrates psycho-social stress and organ dysfunction. Caregivers of PD experience an extraordinary amount of stress and suPAR's role as prognostic marker has not yet been assessed in caregivers of PD. The aim of this study was to determine the relationship between suPAR levels and PD caregiver burden. Healthy volunteers who accompanied patients with parkinsonism (n = 35) donated blood samples, and complete blood counts (CBC), CRP, and suPAR levels were measured. Participants were then interviewed by telephone and stratified into primary and non-primary caregiver groups. Their caregiver burden was quantified through the Zarit Caregiver Burden Short Form (ZBI-12). The resultant data demonstrated higher plasma levels of suPAR and ZBI-12 scores for the primary caregiver group relative to the non-primary caregiver group (suPAR level: 3.73 vs. 2.72 ng/mL, p = 0.01; ZBI-12: 18.57 vs. 5.4, p < 0.0001; Table). The data also revealed a moderate positive correlation between suPAR and ZBI-12 scores. These findings not only demonstrate a correlation between elevated suPAR and caregiving burden in PD, but also further support and raise awareness for the overall psychosocial burden and stress experienced by those caregivers.

Inpatient vs Outpatient Evaluation of Suspected Paraneoplastic Cerebellar Degeneration.

OBJECTIVE: To determine the differences in outcomes of adult patients with ataxia initially evaluated for paraneoplastic cerebellar degeneration (PCD) as inpatients or outpatients. METHODS: In this retrospective cohort analysis, diagnosis, workup, and functional outcomes based on the change in the modified Rankin Scale (mRS) score were compared between patients with ataxia who underwent workup for PCD initially as inpatients vs outpatients between March 2011 and June 2018 at Rush University Medical Center. RESULTS: There were 78 patients included in the analysis; 59% were women, and the average age at symptom onset was 57 ± 19.5 years. Nineteen patients (24.3%) underwent evaluation as inpatients and 59 (75.6%) as outpatients. Admitted patients were more likely to receive immunotherapy (73.7% vs 20.3%, p < 0.0001) and received it faster than outpatients (0.40 months for inpatients, interquartile range [IQR] 0.03-1 months, vs 6.6 months for outpatients, IQR 2-11.7 months; p = 0.01). A greater percentage of inpatients improved based on the mRS score compared with those who underwent evaluation as outpatients (52.63% vs 22.81%, p = 0.01). CONCLUSIONS: More patients improved from baseline in the inpatient cohort. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that for patients undergoing initial evaluation for PCD, patients undergoing inpatient evaluation have better outcomes compared with those undergoing outpatient evaluation.

Genetic ataxias: update on classification and diagnostic approaches.

Ataxia encompasses a large group of rare disorders characterized by irregular movements, decreased coordination, imbalance, kinetic tremor, wide-based stance, and dysarthria. Evaluating ataxia can be challenging considering the volume of disorders and their complex pathologies involving diverse genetic and clinical factors. This is a comprehensive review of the genetic ataxia literature, presenting updated guidelines for differential diagnosis. Age, time course, and family history provide initial guidance for evaluation of ataxia. As genetic testing is increasingly utilized, new genes are discovered and phenotypes for existing disorders are expanded. This review assists physicians by offering a diagnostic roadmap for suspected hereditary ataxia based on the current literature.

Remote telemedicine evaluation of deep brain stimulation candidacy: Retrospective cohort analysis.

OBJECTIVE: To determine whether initial presurgical evaluation of deep brain stimulation (DBS) candidacy with video telemedicine (VTEL) can reliably predict surgical candidacy (patients who will eventually undergo DBS surgery) and decrease resource utilization when compared to an in-person evaluation. METHODS: In this retrospective, cohort analysis, all out-of-state referrals to the San Francisco Veterans Affairs from 2008 to 2013 for DBS therapy were reviewed and their surgical outcomes were assessed until 2017. Patients were designated as good, borderline, or poor surgical candidates after initial evaluation, and their rates of undergoing DBS were recorded. An assessment of patient travel costs was performed. RESULTS: There were 60 out-of-state DBS referrals identified out of the 148 initial presurgical DBS evaluations completed for surgical treatment of dystonia, essential tremor, or Parkinson disease; 24 patients underwent in-person consultation and 36 patients underwent evaluation via VTEL. There was no difference between the rates of undergoing surgical treatment with DBS based on surgical candidacy for patients in the in-person and VTEL cohorts. Patients who underwent initial presurgical screening via VTEL saved time and money. CONCLUSIONS: VTEL can be used to facilitate presurgical screening for DBS and saves costs.

Education Research: An experiential outpatient teleneurology curriculum for residents.

OBJECTIVE: Telemedicine is rapidly becoming a major vehicle of delivering neurologic care to patients who have limited access to subspecialists and exaggerated travel hardship. However, neurology residents receive little to no training in telemedicine in outpatient clinics. METHODS: We piloted, to our knowledge, the first formalized, experiential outpatient teleneurology curriculum. Neurology residents in their third and fourth postgraduate years (PGY3 and PGY4) at the University of California San Francisco completed an interactive lecture and 4 weeks of teleneurology clinics at the San Francisco Veterans Affairs Medical Center. Change in residents' telemedicine knowledge and perspectives on the utility, challenges, benefits, and future practice implementation of teleneurology were evaluated in 11 residents using precurriculum and postcurriculum quizzes and surveys after 2 of 4 weeks on the rotation. RESULTS: Residents' performance on quizzes improved from 53% to 88% (p = 0.002). Residents' impression of video visits compared to in-person visits changed, with more individuals indicating video visits to be the same if not somewhat superior with regards to obtaining a focused history, formulating a focused assessment and plan, communicating recommendations, and the overall care provided (p ≤ 0.04). All residents felt more competent using telemedicine for patient care in their eventual career. CONCLUSION: Our formal didactic and clinic-based teleneurology curriculum for neurology residents, which shared core themes suggested by the 2017 American Academy of Neurology Telemedicine Work Group's published recommendations, showed a statistically significant improvement in knowledge and perspectives about the promise and limitations of teleneurology practice, as well as increased comfort levels in future implementation.

Valbenazine in the treatment of tardive dyskinesia.

Tardive dyskinesia (TD) is a bothersome and - at times, disabling - movement disorder associated with exposure to dopamine receptor antagonist medications. On 11 April 2017, valbenazine became the first US FDA-approved medication indicated for the treatment of TD. Valbenazine is a vesicular monoamine transporter 2 (VMAT2) inhibitor that decreases the abnormal movements of TD. The FDA considered valbenazine a breakthrough therapy in 2014 given its underlying mechanism and its importance in addressing an unmet need, as there were no available FDA-approved medications indicated for TD. The advantages of valbenazine include once-daily dosing and a rapid onset of effect within 2 weeks of treatment initiation.

What influences placebo and nocebo responses in Parkinson's disease?

Placebo treatment is associated with clinical improvements in many medical conditions, but is particularly important in Parkinson's disease because improvements are common, marked, and associated with objective neurochemical and neurophysiologic changes. This review will focus on the effect of the placebo in patients with PD and will discuss the pathophysiology, observed characteristics of motor and nonmotor placebo responses, and the patient and study characteristics that modify the placebo response. Similar to the placebo response, nocebo and lessebo effects alter clinical trial outcomes and impact conclusions. Whereas placebo-associated improvements are positively viewed by patients in clinical practice, they complicate clinical trials. The authors suggest strategies to reduce placebo effects during randomized placebo-controlled trials evaluating new therapies. © 2018 International Parkinson and Movement Disorder Society.

Staff Response Times in the Epilepsy Monitoring Unit: A Study of Diurnal/Nocturnal Variability.

Although inpatient epilepsy monitoring units (EMUs) are generally safe, seizures in this setting can still produce significant morbidity. The MORTEMUS (MORTality in Epilepsy Monitoring Unit Study) study revealed that the most feared consequence of an unattended seizure-sudden unexpected death in epilepsy (SUDEP)-does occur rarely in the EMU. Nearly all cases identified in that study occurred in the evening. The hypothesis for this study is that unwitnessed seizures would be more likely to occur during the night shift, and that response times to seizures would be slower at night, due to multiple variables. A retrospective video-EEG review of all seizures captured in our EMU during a 4-week period in 15 patients admitted was conducted. The time between seizure onset and the arrival of an attendant at the bedside was measured. There were 16 diurnal and 14 nocturnal seizures identified. The median response time during the day shift was approximately 22 ± 28 (0-80) seconds during the day shift, and 49 ± 93 (0-360) during the night shift (Mann-Whitney U test, P = 0.03). There were six seizures that were subclinical or showed subtle clinical signs (head turning or eyes opening), including one prolonged seizure lasting nearly 18 minutes, which all occurred in the evening, went unattended, and were excluded from the statistical analysis. These preliminary findings indicate a statistically significant delay in nursing response times to seizures in the EMU during the night shift. All unattended seizures occurred in the evening. More research is needed to study human factors, systems issues, or patient-related/physiological factors that slow response times.

Baylisascaris procyonis-Associated Meningoencephalitis in a Previously Healthy Adult, California, USA.

After severe neurocognitive decline developed in an otherwise healthy 63-year-old man, brain magnetic resonance imaging showed eosinophilic meningoencephalitis and enhancing lesions. The patient tested positive for antibodies to Baylisascaris spp. roundworms, was treated with albendazole and dexamethasone, and showed improvement after 3 months. Baylisascariasis should be considered for all patients with eosinophilic meningitis.