Healthcare Delivery and Huntington’s Disease During the Time of COVID-19

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.

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

Journal of Huntington s Disease ◽

10.3233/jhd-200452 ◽

2021 ◽

pp. 1-10

Author(s):

Emma M. Waddell ◽

Karthik Dinesh ◽

Kelsey L. Spear ◽

Molly J. Elson ◽

Ellen Wagner ◽

...

Keyword(s):

Pilot Study ◽

Huntington's Disease ◽

Huntington’S Disease ◽

Clinical Care ◽

Smartphone Application ◽

Sensor Data ◽

Finger Tapping ◽

Real World Data ◽

Significant Difference ◽

At Home

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.

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The Impact of Upcoming Treatments in Huntington’s Disease: Resource Capacity Limitations and Access to Care Implications

Journal of Huntington s Disease ◽

10.3233/jhd-200462 ◽

2021 ◽

pp. 1-9

Author(s):

Mark Guttman ◽

Marco Pedrazzoli ◽

Marina Ponomareva ◽

Marsha Pelletier ◽

Louisa Townson ◽

...

Keyword(s):

Huntington's Disease ◽

Huntington’S Disease ◽

Healthcare Delivery ◽

Access To Treatment ◽

Capacity Limitations ◽

Second Year ◽

Capacity Gap ◽

The Impact ◽

To Receive ◽

Resource Capacity

Background: The most advanced disease-modifying therapies (DMTs) in development for Huntington’s disease (HD) require intrathecal (IT) administration, which may create or exacerbate bottlenecks in resource capacity. Objective: To understand the readiness of healthcare systems for intrathecally administered HD DMTs in terms of resource capacity dynamics and implications for patients’ access to treatment. Methods: Forty HD centres across 12 countries were included. Qualitative and quantitative data on current capacity in HD centres and anticipated capacity needs following availability of a DMT were gathered via interviews with healthcare professionals (HCPs). Data modelling was used to estimate the current capacity gap in HD centres. Results: From interviews with 218 HCPs, 25% of HD centres are estimated to have the three components required for IT administration (proceduralists, nurses and facilities). On average, 114 patients per centre per year are anticipated to receive intrathecally administered DMTs in the future. At current capacity, six of the sampled centres are estimated to be able to deliver DMTs to all the anticipated patients based on current resources. The estimated waiting list for IT administration at current capacity will average 60 months (5 years) by the second year after DMT availability. Conclusion: Additional resources are needed in HD centres for future DMTs to be accessible to all anticipated patients. Timely collaboration by the HD community will be needed to address capacity gaps. Healthcare policymakers and payers will need to address costs and navigate challenges arising from country- or region-specific healthcare delivery schemes.

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“You run out of hope:” An Exploration of Low-Income Parents’ Experiences with Food Insecurity using Photovoice

Public Health Nutrition ◽

10.1017/s1368980021002743 ◽

2021 ◽

pp. 1-21

Author(s):

Payge Lindow ◽

Irene H. Yen ◽

Mingyu Xiao ◽

Cindy W. Leung

Keyword(s):

Food Insecurity ◽

San Francisco ◽

Low Income ◽

Eating Behaviors ◽

Comparative Method ◽

Well Being ◽

Structured Interviews ◽

Unhealthy Eating ◽

Low Income Families ◽

The Impact

ABSTRACT Objective: Using an adaption of the Photovoice method, this study explored how food insecurity affected parents’ ability to provide food for their family, their strategies for managing household food insecurity, and the impact of food insecurity on their well-being. Design: Parents submitted photos around their families’ experiences with food insecurity. Afterwards, they completed in-depth, semi-structured interviews about their photos. The interviews were transcribed and analyzed for thematic content using the constant comparative method. Setting: San Francisco Bay Area, California, USA. Subjects: 17 parents (14 mothers and 3 fathers) were recruited from a broader qualitative study on understanding the experiences of food insecurity in low-income families. Results: Four themes were identified from the parents’ photos and interviews. First, parents described multiple aspects of their food environment that promoted unhealthy eating behaviors. Second, parents shared strategies they employed to acquire food with limited resources. Third, parents expressed feelings of shame, guilt, and distress resulting from their experience of food insecurity. And finally, parents described treating their children to special foods to cultivate a sense of normalcy. Conclusions: Parents highlighted the external contributors and internal struggles of their experiences of food insecurity. Additional research to understand the experiences of the food-insecure families may help to improve nutrition interventions targeting this structurally vulnerable population.

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Measuring the Impact of a Full Service Grocery Store in a Food Desert

The International Journal of Community and Social Development ◽

10.1177/25166026211015488 ◽

2021 ◽

Vol 3 (2) ◽

pp. 161-176

Author(s):

Kellie Schneider ◽

Diana Cuy Castellanos ◽

Felix Fernando ◽

Jeanne A. Holcomb

Keyword(s):

Systems Engineering ◽

Low Income ◽

Social Impact ◽

Food Deserts ◽

Well Being ◽

Environmental Indicators ◽

Grocery Store ◽

The Impact ◽

Health And Well Being

Food deserts, areas in which it is difficult to obtain affordable, nutritious food, are especially problematic in low-income neighbourhoods. One model for addressing food hardship and unemployment issues within low-income food deserts is a cooperative grocery store. Through the cooperative model, the grocery store can serve as a cornerstone to address socio-economic marginalisation of low-income neighbourhoods and improve the health and well-being of its residents. It is important for communities and policymakers to be able to assess the effectiveness of these types of endeavours beyond traditional economic factors such as profitability. This article uses a systems engineering approach to develop a framework for measuring the holistic impact of a cooperative grocery store on community health and well-being. This framework encompasses values that characterise the relationship between food retail, economic viability and social equality. We develop a dashboard to display the key metrics for measuring the economic, social and environmental indicators that reflect a grocery store’s social impact. We demonstrate the usefulness of the framework through a case study of a full-service cooperative grocery store that is planned within the city of Dayton, OH.

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Psychological distress during COVID-19 pandemic in low-income and middle-income countries: a cross-sectional study of older persons in Thailand

BMJ Open ◽

10.1136/bmjopen-2020-047650 ◽

2021 ◽

Vol 11 (4) ◽

pp. e047650

Author(s):

Wiraporn Pothisiri ◽

Paolo Miguel Manalang Vicerra

Keyword(s):

Psychological Distress ◽

Low Income ◽

Older Persons ◽

Online Survey ◽

Well Being ◽

Secondary Outcome ◽

Ageing Society ◽

Psychological Well Being ◽

Middle Income ◽

The Impact

ObjectiveThe COVID-19 situation in Thailand was controlled with various social measures. Much of the information covered in the media and in studies focused on the public health and economic aspects of the pandemic. This study aimed to explore the psychological well-being of older people, which is important especially in an ageing society categorised as low income or middle income due to the limits of economic and healthcare resources.SettingThe impact of COVID-19 on older persons in Thailand, an online survey, taken across nine provinces within the five regions of the country.ParticipantsInformation was collected from 1230 adults aged at least 60 years old.If an older person was illiterate, unable to access the internet or had a disability preventing them from responding to the survey, an intermediary residing in the community conducted the survey interview.Primary and secondary outcome measuresThe analysis focused on the worries of older adults and the factors associated with psychological distress experienced during the pandemic using logistic regression analysis.ResultsThe majority of people aged at least 60 years old experienced psychological distress during COVID-19. Employment loss (OR 1.08, 95% CI 0.78 to 1.38), inadequate income (OR 1.77, 95% CI 1.28 to 2.44) and debt incursion (OR 2.74, 95% CI 1.57 to 4.80) were detrimental to psychological well-being. The negative changes in the perception of their health status (OR 1.92, 95% CI 1.23 to 2.99) and decreased life satisfaction (OR 1.49, 95% CI 0.45 to 1.87) also weighed on older Thais. The protective factors for psychological well-being were residing in rural areas (OR 0.46, 95% CI 0.35 to 0.61) and being married (OR 0.75, 95% CI 0.55 to 1.01).ConclusionObserving the concerns of the older population is important for introducing policies that can alleviate their precarious financial and health statuses.

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Abnormal Spinal Cord Myelination due to Oligodendrocyte Dysfunction in a Model of Huntington’s Disease

Journal of Huntington s Disease ◽

10.3233/jhd-210495 ◽

2021 ◽

pp. 1-8

Author(s):

Costanza Ferrari Bardile ◽

Harwin Sidik ◽

Reynard Quek ◽

Nur Amirah Binte Mohammad Yusof ◽

Marta Garcia-Miralles ◽

...

Keyword(s):

Spinal Cord ◽

Huntington's Disease ◽

Huntington’S Disease ◽

Oligodendrocyte Progenitor Cells ◽

Wild Type ◽

Specific Expression ◽

Relative Contribution ◽

Related Proteins ◽

The Impact ◽

Cervical Area

Background: The relative contribution of grey matter (GM) and white matter (WM) degeneration to the progressive brain atrophy in Huntington’s disease (HD) has been well studied. The pathology of the spinal cord in HD is comparatively less well documented. Objective: We aim to characterize spinal cord WM abnormalities in a mouse model of HD and evaluate whether selective removal of mutant huntingtin (mHTT) from oligodendroglia rescues these deficits. Methods: Histological assessments were used to determine the area of GM and WM in the spinal cord of 12-month-old BACHD mice, while electron microscopy was used to analyze myelin fibers in the cervical area of the spinal cord. To investigate the impact of inactivation of mHTT in oligodendroglia on these measures, we used the previously described BACHDxNG2Cre mouse line where mHTT is specifically reduced in oligodendrocyte progenitor cells. Results: We show that spinal GM and WM areas are significantly atrophied in HD mice compared to wild-type controls. We further demonstrate that specific reduction of mHTT in oligodendroglial cells rescues the atrophy of spinal cord WM, but not GM, observed in HD mice. Inactivation of mHTT in oligodendroglia had no effect on the density of oligodendroglial cells but enhanced the expression of myelin-related proteins in the spinal cord. Conclusion: Our findings demonstrate that the myelination abnormalities observed in brain WM structures in HD extend to the spinal cord and suggest that specific expression of mHTT in oligodendrocytes contributes to such abnormalities.

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Characterising Upper Limb Movements in Huntington's Disease and the Impact of Restricted Visual Cues

PLoS ONE ◽

10.1371/journal.pone.0133709 ◽

2015 ◽

Vol 10 (8) ◽

pp. e0133709 ◽

Cited By ~ 2

Author(s):

Jessica Despard ◽

Anne-Marie Ternes ◽

Bleydy Dimech-Betancourt ◽

Govinda Poudel ◽

Andrew Churchyard ◽

...

Keyword(s):

Huntington's Disease ◽

Huntington’S Disease ◽

Upper Limb ◽

Visual Cues ◽

Limb Movements ◽

Upper Limb Movements ◽

The Impact

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Lessons Learned From an Early Hotspot During the COVID-19 Pandemic

The American Surgeon ◽

10.1177/0003134821994757 ◽

2021 ◽

pp. 000313482199475

Author(s):

Brett M. Chapman ◽

George M. Fuhrman

Keyword(s):

Decision Making ◽

Surgical Education ◽

Clinical Care ◽

Well Being ◽

Educational Environment ◽

Lessons Learned ◽

Residency Programs ◽

Surgical Residency ◽

The Impact

The Covid-19 pandemic has provided challenges for surgical residency programs demanding fluid decision making focused on providing care for our patients, maintaining an educational environment, and protecting the well-being of our residents. This brief report summarizes the impact of the impact on our residency programs clinical care and education. We have identified opportunities to improve our program using videoconferencing, managing recruitment, and maintaining a satisfactory caseload to ensure the highest possible quality of surgical education.

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Someone to live for: social well-being, parenthood status, and decision-making in oncology.

Journal of Clinical Oncology ◽

10.1200/jco.1995.13.5.1255 ◽

1995 ◽

Vol 13 (5) ◽

pp. 1255-1264 ◽

Cited By ~ 101

Author(s):

S B Yellen ◽

D F Cella

Keyword(s):

Cancer Therapy ◽

Marital Status ◽

Advanced Disease ◽

Well Being ◽

Treatment Preferences ◽

Aggressive Treatment ◽

Switch Point ◽

The Impact ◽

Treatment Acceptance ◽

At Home

PURPOSE Little is known about the influence of social factors on treatment preferences and desire for aggressive cancer therapy. The present study assessed subjective and objective social indicators in patient preferences for treatment. METHODS Cancer patients (N = 296) with diverse diagnoses and stages read sets of hypothetical vignettes describing patients with early-stage and advanced disease. In the first set, patients made decisions about treatment acceptance given varying levels of either increasing cure or extending survival. In the second set, the point at which patients shifted preferences from mild to severe treatment to improve likelihood of 1-year survival (switch point) was the dependent measure. We assessed the impact of quality-of-life (QL) domains measured by the Functional Assessment of Cancer Therapy-General (FACT-G), having children, marital status, and living arrangements on treatment preferences and switch points. RESULTS The Social Well-Being (SWB) subscale of the FACT-G predicted both treatment acceptance (P = .007) and switch point (P = .043) in the advanced-disease vignettes, with lower SWB associated with less aggressive preferences. Children living at home was likewise associated with more aggressive intent both in treatment preferences (P = .003, advanced-disease vignette) and switch point (P < .001 and P = .001 for early- and advanced-disease vignettes, respectively). Living with others predicted more aggressive intent in the advanced-disease vignette (P = .03). Marital status did not predict either treatment acceptance or switch point. CONCLUSION Positive social well-being, as well as having children living at home, predicted patient willingness to accept aggressive treatment. Willingness to receive aggressive treatment may explain or mediate previously reported salutory effects of social support on cancer outcomes.

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Digitally disconnected: A qualitative study of patient perspectives on the digital divide and potential solutions (Preprint)

10.2196/preprints.33364 ◽

2021 ◽

Author(s):

Maria Alcocer Alkureishi ◽

Z-Yi Choo ◽

Ali Rahman ◽

Kimberly Ho ◽

Jonah Benning-Shorb ◽

...

Keyword(s):

Digital Divide ◽

Low Income ◽

Medical Center ◽

Clinical Care ◽

Healthcare Delivery ◽

Patient Perspectives ◽

Valuable Insight ◽

Theory Approach ◽

Technology Access ◽

Broadband Internet

BACKGROUND As telemedicine utilization increased during the COVID-19 pandemic, divergent usage patterns for video and audio-only telephone visits emerged. Older, low-income, minority, and non-English speaking Medicaid patients especially are at highest risk of experiencing technology access and digital literacy barriers. This raises concern for disparities in healthcare access and widening of the “digital divide”, the separation of those with technological access and knowledge and those who do not. While studies demonstrate correlation between racial and socioeconomic demographics and technological access and ability, individual patients' perspectives of the divide and its impacts remain unclear. OBJECTIVE We aimed to interview patients to understand their perspectives on 1) the definition, causes, and impact of the digital divide, 2) whose responsibility it is to address, and 3) potential solutions to mitigate the digital divide. METHODS Between December 2020-March 2021, we conducted 54 semi-structured telephone interviews with adult patients and parents of pediatric patients who had virtual visits (phone and/or video) sometime between March and September 2020 at the University of Chicago Medical Center primary care clinics. A grounded theory approach was used to analyze interview data. RESULTS Patients were keenly aware of the digital divide and described impacts beyond healthcare, including employment, education, community and social contexts, and personal economic stability. Patients described that individuals, government, libraries, schools, healthcare organizations, and even private businesses all shared the responsibility to address the divide. Proposed solutions to address the divide included conducting community technology needs assessments and improving technology access, literacy training, and resource awareness. Recognizing that some individuals will never cross the divide, patients also emphasized continued support of low-tech communication methods and healthcare delivery to prevent widening of the digital divide. Furthermore, patients viewed technology access and literacy as drivers of the social determinants of health (SDOH), profoundly influencing how SDOHs function to worsen or improve health disparities. CONCLUSIONS Patient perspectives provide valuable insight into the digital divide and can inform solutions to mitigate health and resulting societal inequities. Future work is needed to understand the digital needs of disconnected individuals and communities. As clinical care and delivery continue to integrate telehealth, studies are needed to explore whether having a video or audio-only phone visit results in different patient outcomes and utilization. Advocacy efforts to disseminate public and private resources can also expand device and broadband internet access, improve technology literacy, and increase funding to support both high- and low-tech forms of healthcare delivery for the disconnected.

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