Telemedicine for Parkinson's Disease: Limited Engagement Between Local Clinicians and Remote Specialists.

INTRODUCTION: The integration of remote specialists into local care teams has not been widely evaluated. METHODS: Therefore, we surveyed clinicians whose patients with Parkinson's disease had participated in a national randomized controlled trial of video visits to determine (1) whether clinicians received recommendations from remote specialists; (2) whether those recommendations were implemented; (3) what barriers to specialty care local clinicians perceived; and (4) whether they would recommend video visits. RESULTS: Of 183 clinicians surveyed, 89 (49%) responded. Less than half received the recommendations of remote specialists, but they implemented most of the recommendations they received and found them to be beneficial. CONCLUSION: The greatest perceived barrier among respondents was distance from patient to specialist, and 40% of local clinicians would recommend video visits. As telemedicine grows, improved communication between remote specialists and local clinicians is likely needed.

Patient and Physician Perceptions of Virtual Visits for Parkinson's Disease: A Qualitative Study.

Background and Introduction: Delivering care through telemedicine directly into the patient's home is increasingly feasible, valuable, and beneficial. However, qualitative data on how patients' and physicians' perceive these virtual house calls are lacking. We conducted a qualitative analysis of perceptions of these visits for Parkinson's disease to (1) determine how patients and physicians perceive virtual visits and (2) identify components contributing to positive and negative perceptions. MATERIALS AND METHODS: Qualitative survey data were collected from patients and physicians during a 12-month randomized controlled trial of virtual house calls for Parkinson's disease. Data from 149 cases were analyzed using case-based qualitative content analysis and quantitative sentiment analysis techniques. RESULTS: Positive and negative perceptions of virtual visits were driven by three themes: (1) personal benefits of the virtual visit, (2) perceived quality of care, and (3) perceived quality of interpersonal engagement. In general, participants who identified greater personal benefit, high quality of care, and good interpersonal engagement perceived visits positively. Technical problems with the software were commonly mentioned. The sentiment analysis for patients was strongly favorable (+2.5) and moderately favorable for physicians (+0.8). Physician scores were lowest (-0.3) for the ability to perform a detailed motor examination remotely. DISCUSSION: Patients and providers generally view telemedicine favorably, but individual experiences are dependent on technical issues. CONCLUSIONS: Satisfaction with and effectiveness of remote care will likely increase as common technical problems are resolved.

Early Experience With Full-scope Shared-care Teleglaucoma in Canada.

PRCIS: Large Canadian full-scope, shared-care teleglaucoma facilitates efficient management and diversion of medically stable patients away from overburdened subspecialty clinics while allowing patients the convenience of shorter travel, shorter wait time, and continuity with one provider. This report shares Care1 protocol, early patient characteristics, and quality data. PURPOSE: This paper describes early experience with Care1, a large full-scope, shared-care teleglaucoma program. Optometrists located in high-demand locations saw patients in-person, acquired clinical history, performed a physical examination, organized diagnostic testing, then uploaded data to a proprietary online platform where they were able to collaborate with participating ophthalmologists to make plans for patient care. MATERIALS AND METHODS: The Care1 database was queried for all patients with a diagnosis of glaucoma or glaucoma suspect seen between February 2016 and March 2017. Clinical characteristics like diagnosis, ocular medication history, best-corrected visual acuity, intraocular pressure, cup-to-disc ratios, optical coherence tomography imaging results, and central corneal thickness were collected. Quality metrics studied included rates of referral to an in-person ophthalmologist and consistency of cup-to-disc assessments between in-person optometrists and remote ophthalmologists. RESULTS: A total of 4070 patients received care at a Care1 teleophthalmology site in 2 provinces for glaucoma assessment from February 2016 to March 2017. The population was 55.1% female, and the average age was 57.8 years. Overall, 97.3% of patients had a best-corrected visual acuity between 20/20 and 20/40 and 3.3% had an intraocular pressure >26. An in-person consultation with an ophthalmologist was recommended for 1.9% of patients. CONCLUSION: Early experience with this full-scope, shared-care teleglaucoma program in Canada indicates it is a convenient, collaborative model of care for glaucoma suspects, and medically stable glaucoma patients.

GEORGE®: A Pilot Study of a Smartphone Application for Huntington's Disease.

BACKGROUND: Current Huntington's disease (HD) measures are limited to subjective, episodic assessments conducted in clinic. Smartphones can enable the collection of objective, real-world data but their use has not been extensively evaluated in HD. OBJECTIVE: Develop and evaluate a smartphone application to assess feasibility of use and key features of HD in clinic and at home. METHODS: We developed GEORGE®, an Android smartphone application for HD which assesses voice, chorea, balance, gait, and finger tapping speed. We then conducted an observational pilot study of individuals with manifest HD, prodromal HD, and without a movement disorder. In clinic, participants performed standard clinical assessments and a battery of active tasks in GEORGE. At home, participants were instructed to complete the activities thrice daily for one month. Sensor data were used to measure chorea, tap rate, and step count. Audio data was not analyzed. RESULTS: Twenty-three participants (8 manifest HD, 5 prodromal HD, 10 controls) enrolled, and all but one completed the study. On average, participants used the application 2.1 times daily. We observed a significant difference in chorea score (HD: 19.5; prodromal HD: 4.5, p = 0.007; controls: 4.3, p = 0.001) and tap rate (HD: 2.5 taps/s; prodromal HD: 8.9 taps/s, p = 0.001; controls: 8.1 taps/s, p = 0.001) between individuals with and without manifest HD. Tap rate correlated strongly with the traditional UHDRS finger tapping score (left hand: r = -0.82, p = 0.022; right hand: r = -0.79, p = 0.03). CONCLUSION: GEORGE is an acceptable and effective tool to differentiate individuals with and without manifest HD and measure key disease features. Refinement of the application's interface and activities will improve its usability and sensitivity and, ideally, make it useful for clinical care and research.

Expanding the genotype-phenotype correlation of childhood sensory polyneuropathy of genetic origin.

Pure sensory polyneuropathy of genetic origin is rare in childhood and hence important to document the clinical and genetic etiologies from single or multi-center studies. This study focuses on a retrospective chart-review of neurological examinations and genetic and electrodiagnostic data of confirmed sensory polyneuropathy in subjects at a tertiary-care Children's Hospital from 2013 to 2019. Twenty subjects were identified and included. Neurological examination and electrodiagnostic testing showed gait-difficulties, absent tendon reflexes, decreased joint-position, positive Romberg's test and large fiber sensory polyneuropathy on sensory nerve conduction studies in all patients associated with lower-extremity spasticity (6), cardiac abnormalities or cardiomyopathy (5), developmental delay (4), scoliosis (3), epilepsy (3) and hearing-difficulties (2). Confirmation of genetic diagnosis in correlation with clinical presentation was obtained in all cases (COX20 n = 2, HADHA n = 2, POLG n = 1, FXN n = 4, ATXN2 n = 3, ATM n = 3, GAN n = 2, SPG7 n = 1, ZFYVE26 n = 1, FH n = 1). Our single-center study shows genetic sensory polyneuropathies associated with progressive neurodegenerative disorders such as mitochondrial ataxia, Friedreich ataxia, spinocerebellar ataxia type 2, ataxia telangiectasia, spastic paraplegia, giant axonal neuropathy, and fumarate hydratase deficiency. We also present our cohort data in light of clinical features reported for each gene-specific disease subtype in the literature and highlight the importance of genetic testing in the relevant clinical context of electrophysiological findings of peripheral sensory polyneuropathy.

Patient-reported impact of symptoms in Huntington disease: PRISM-HD.

OBJECTIVE: To determine the frequency and relative importance of symptoms experienced by adults with Huntington disease (HD) and to identify factors associated with a higher disease burden. METHODS: We performed 40 qualitative interviews (n = 20 with HD, n = 20 caregivers) and analyzed 2,082 quotes regarding the symptomatic burden of HD. We subsequently performed a cross-sectional study with 389 participants (n = 156 with HD [60 of whom were prodromal], n = 233 caregivers) to assess the prevalence and relative importance (scale 0-4) of 216 symptoms and 15 symptomatic themes in HD. Cross-correlation analysis was performed based on sex, disease duration, age, number of CAG repeats, disease burden, Total Functional Capacity score, employment status, disease status, and ambulatory status. RESULTS: The symptomatic themes with the highest prevalence in HD were emotional issues (83.0%), fatigue (82.5%), and difficulty thinking (77.0%). The symptomatic themes with the highest relative importance to participants were difficulty thinking (1.91), impaired sleep or daytime sleepiness (1.90), and emotional issues (1.81). High Total Functional Capacity scores, being employed, and having prodromal HD were associated with a lower prevalence of symptomatic themes. Despite reporting no clinical features of the disease, prodromal individuals demonstrated high rates of emotional issues (71.2%) and fatigue (69.5%). There was concordance between the prevalence of symptoms reported by manifest individuals and caregivers. CONCLUSIONS: Many symptomatic themes affect the lives of those with HD. These themes have a variable level of importance to the HD population and are identified both by those with HD and by their caregivers.

Primary Care in Transgender Persons.

The preventive health care needs of transgender persons are nearly identical to the rest of the population. Special consideration should be given, however, to the impact of gender-affirming hormone regimens and surgical care on preventive screenings. Providers should integrate a more comprehensive view of health when caring for transgender persons and address the impact of social determinants and other barriers to accessing affirming, inclusive health care. In individual interactions, providers must consider the unique impact that a gender identity and expression different from the assigned gender at birth affects patient-provider interactions, including the history, physical examination, and diagnostic testing.

Using Smartphones and Machine Learning to Quantify Parkinson Disease Severity: The Mobile Parkinson Disease Score.

Importance: Current Parkinson disease (PD) measures are subjective, rater-dependent, and assessed in clinic. Smartphones can measure PD features, yet no smartphone-derived rating score exists to assess motor symptom severity in real-world settings. Objectives: To develop an objective measure of PD severity and test construct validity by evaluating the ability of the measure to capture intraday symptom fluctuations, correlate with current standard PD outcome measures, and respond to dopaminergic therapy. Design, Setting, and Participants: This observational study assessed individuals with PD who remotely completed 5 tasks (voice, finger tapping, gait, balance, and reaction time) on the smartphone application. We used a novel machine-learning-based approach to generate a mobile Parkinson disease score (mPDS) that objectively weighs features derived from each smartphone activity (eg, stride length from the gait activity) and is scaled from 0 to 100 (where higher scores indicate greater severity). Individuals with and without PD additionally completed standard in-person assessments of PD with smartphone assessments during a period of 6 months. Main Outcomes and Measures: Ability of the mPDS to detect intraday symptom fluctuations, the correlation between the mPDS and standard measures, and the ability of the mPDS to respond to dopaminergic medication. Results: The mPDS was derived from 6148 smartphone activity assessments from 129 individuals (mean [SD] age, 58.7 [8.6] years; 56 [43.4%] women). Gait features contributed most to the total mPDS (33.4%). In addition, 23 individuals with PD (mean [SD] age, 64.6 [11.5] years; 11 [48%] women) and 17 without PD (mean [SD] age 54.2 [16.5] years; 12 [71%] women) completed in-clinic assessments. The mPDS detected symptom fluctuations with a mean (SD) intraday change of 13.9 (10.3) points on a scale of 0 to 100. The measure correlated well with the Movement Disorder Society Unified Parkinson Disease's Rating Scale total (r = 0.81; P < .001) and part III only (r = 0.88; P < .001), the Timed Up and Go assessment (r = 0.72; P = .002), and the Hoehn and Yahr stage (r = 0.91; P < .001). The mPDS improved by a mean (SD) of 16.3 (5.6) points in response to dopaminergic therapy. Conclusions and Relevance: Using a novel machine-learning approach, we created and demonstrated construct validity of an objective PD severity score derived from smartphone assessments. This score complements standard PD measures by providing frequent, objective, real-world assessments that could enhance clinical care and evaluation of novel therapeutics.

National randomized controlled trial of virtual house calls for Parkinson disease.

OBJECTIVE: To determine whether providing remote neurologic care into the homes of people with Parkinson disease (PD) is feasible, beneficial, and valuable. METHODS: In a 1-year randomized controlled trial, we compared usual care to usual care supplemented by 4 virtual visits via video conferencing from a remote specialist into patients' homes. Primary outcome measures were feasibility, as measured by the proportion who completed at least one virtual visit and the proportion of virtual visits completed on time; and efficacy, as measured by the change in the Parkinson's Disease Questionnaire-39, a quality of life scale. Secondary outcomes included quality of care, caregiver burden, and time and travel savings. RESULTS: A total of 927 individuals indicated interest, 210 were enrolled, and 195 were randomized. Participants had recently seen a specialist (73%) and were largely college-educated (73%) and white (96%). Ninety-five (98% of the intervention group) completed at least one virtual visit, and 91% of 388 virtual visits were completed. Quality of life did not improve in those receiving virtual house calls (0.3 points worse on a 100-point scale; 95% confidence interval [CI] -2.0 to 2.7 points; p = 0.78) nor did quality of care or caregiver burden. Each virtual house call saved patients a median of 88 minutes (95% CI 70-120; p < 0.0001) and 38 miles per visit (95% CI 36-56; p < 0.0001). CONCLUSIONS: Providing remote neurologic care directly into the homes of people with PD was feasible and was neither more nor less efficacious than usual in-person care. Virtual house calls generated great interest and provided substantial convenience. CLINICALTRIALSGOV IDENTIFIER: NCT02038959. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that for patients with PD, virtual house calls from a neurologist are feasible and do not significantly change quality of life compared to in-person visits. The study is rated Class III because it was not possible to mask patients to visit type.