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2.
J Huntingtons Dis ; 10(4): 479-484, 2021.
Article in English | MEDLINE | ID: covidwho-1496974

ABSTRACT

BACKGROUND: The COVID-19 pandemic has increased the need for remote healthcare options among patients with Huntington's disease (HD). However, since not every HD patient is suitable for telehealth, it is important to differentiate who can be seen virtually from who should remain as in-person. Unfortunately, there are no clinical guidelines on how to evaluate HD patients for telehealth eligibility. OBJECTIVE: To standardize the teleneurology selection process in HD by implementing a screening tool that accounts for patient-specific factors. METHODS: We organized various indications and contraindications to teleneurology into a flowchart. If any indications or contraindications were met, patients were assigned to telehealth or maintained as in-person, respectively. If no indications or contraindications were met, patients were given the option of telehealth or in-person for their upcoming appointments. In two implementation cycles, we tested this screening tool among all HD patients scheduled for clinic visits, aided by chart review and phone interview. RESULTS: In a cohort of 81 patients, telehealth acceptance among eligible patients increased from 45.0%to 83.3%. Frequency of telehealth visits increased from a pre-intervention baseline of 12.8%to 28.2%. CONCLUSION: Teleneurology utilization among HD patients more than doubled across our study. Our intervention promotes consistency and patient-centeredness in HD clinical care and streamlines the overall telehealth selection process. Future studies can seek to reduce telehealth no-shows and also evaluate the utility of the motor and psychiatric criteria included in our screening tool.


Subject(s)
COVID-19 , Huntington Disease/therapy , Neurology/standards , Patient Acceptance of Health Care , Patient Preference , Telemedicine/standards , Adult , Ambulatory Care , COVID-19/prevention & control , Cohort Studies , Facilities and Services Utilization , Female , Humans , Male , Middle Aged , Neurology/organization & administration , Software Design , Telemedicine/organization & administration , Tertiary Care Centers
3.
J Neurol ; 268(7): 2550-2559, 2021 Jul.
Article in English | MEDLINE | ID: covidwho-1336077

ABSTRACT

BACKGROUND: The Clinch Token Transfer Test (C3t) is a bi-manual coin transfer task that incorporates cognitive tasks to add complexity. This study explored the concurrent and convergent validity of the C3t as a simple, objective assessment of impairment that is reflective of disease severity in Huntington's, that is not reliant on clinical expertise for administration. METHODS: One-hundred-and-five participants presenting with pre-manifest (n = 16) or manifest (TFC-Stage-1 n = 39; TFC-Stage-2 n = 43; TFC-Stage-3 n = 7) Huntington's disease completed the Unified Huntington's Disease Rating Scale and the C3t at baseline. Of these, thirty-three were followed up after 12 months. Regression was used to estimate baseline individual and composite clinical scores (including cognitive, motor, and functional ability) using baseline C3t scores. Correlations between C3t and clinical scores were assessed using Spearman's R and visually inspected in relation to disease severity using scatterplots. Effect size over 12 months provided an indication of longitudinal behaviour of the C3t in relation to clinical measures. RESULTS: Baseline C3t scores predicted baseline clinical scores to within 9-13% accuracy, being associated with individual and composite clinical scores. Changes in C3t scores over 12 months were small ([Formula: see text] ≤ 0.15) and mirrored the change in clinical scores. CONCLUSION: The C3t demonstrates promise as a simple, easy to administer, objective outcome measure capable of predicting impairment that is reflective of Huntington's disease severity and offers a viable solution to support remote clinical monitoring. It may also offer utility as a screening tool for recruitment to clinical trials given preliminary indications of association with the prognostic index normed for Huntington's disease.


Subject(s)
Huntington Disease , Activities of Daily Living , Humans , Huntington Disease/diagnosis , Prognosis , Severity of Illness Index , Upper Extremity
4.
J Huntingtons Dis ; 10(2): 313-322, 2021.
Article in English | MEDLINE | ID: covidwho-1195998

ABSTRACT

BACKGROUND: Safer-at-home orders during the COVID-19 pandemic altered the structure of clinical care for Huntington's disease (HD) patients. This shift provided an opportunity to identify limitations in the current healthcare infrastructure and how these may impact the health and well-being of persons with HD. OBJECTIVE: The study objectives were to assess the feasibility of remote healthcare delivery in HD patients, to identify socioeconomic factors which may explain differences in feasibility and to evaluate the impact of safer-at-home orders on HD patient stress levels. METHODS: This observational study of a clinical HD population during the 'safer-at-home' orders asked patients or caregivers about their current access to healthcare resources and patient stress levels. A chart review allowed for an assessment of socioeconomic status and characterization of HD severity. RESULTS: Two-hundred and twelve HD patients were contacted with 156 completing the survey. During safer-at-home orders, the majority of HD patients were able to obtain medications and see a physician; however, 25% of patients would not commit to regular telehealth visits, and less than 50% utilized an online healthcare platform. We found that 37% of participants were divorced/single, 39% had less than a high school diploma, and nearly 20% were uninsured or on low-income health insurance. Patient stress levels correlated with disease burden. CONCLUSION: A significant portion of HD participants were not willing to participate in telehealth services. Potential explanations for these limitations may include socioeconomic barriers and caregiving structure. These observations illustrate areas for clinical care improvement to address healthcare disparities in the HD community.


Subject(s)
COVID-19 , Huntington Disease , Telemedicine , Adult , Cost of Illness , Female , Healthcare Disparities , Humans , Huntington Disease/epidemiology , Huntington Disease/therapy , Male , Middle Aged , Patient Acceptance of Health Care , SARS-CoV-2 , Socioeconomic Factors , Surveys and Questionnaires
5.
Biomolecules ; 10(8)2020 08 07.
Article in English | MEDLINE | ID: covidwho-823584

ABSTRACT

Neurodegenerative diseases are the second most common cause of death and characterized by progressive impairments in movement or mental functioning in the central or peripheral nervous system. The prevention of neurodegenerative disorders has become an emerging public health challenge for our society. Melatonin, a pineal hormone, has various physiological functions in the brain, including regulating circadian rhythms, clearing free radicals, inhibiting biomolecular oxidation, and suppressing neuroinflammation. Cumulative evidence indicates that melatonin has a wide range of neuroprotective roles by regulating pathophysiological mechanisms and signaling pathways. Moreover, melatonin levels are decreased in patients with neurodegenerative diseases. In this review, we summarize current knowledge on the regulation, molecular mechanisms and biological functions of melatonin in neurodegenerative diseases such as Alzheimer's disease, Parkinson's disease, Huntington's disease, amyotrophic lateral sclerosis, vascular dementia and multiple sclerosis. We also discuss the clinical application of melatonin in neurodegenerative disorders. This information will lead to a better understanding of the regulation of melatonin in the brain and provide therapeutic options for the treatment of various neurodegenerative diseases.


Subject(s)
Circadian Rhythm , Melatonin/physiology , Neurodegenerative Diseases/metabolism , Oxidative Stress , Alzheimer Disease/metabolism , Amyotrophic Lateral Sclerosis/metabolism , Animals , Circadian Rhythm/drug effects , Dementia, Vascular/metabolism , Humans , Huntington Disease/metabolism , Melatonin/therapeutic use , Multiple Sclerosis/metabolism , Neurodegenerative Diseases/drug therapy , Oxidative Stress/drug effects , Parkinson Disease/metabolism
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