Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach.

Introduction: eHealth seems promising in addressing challenges in the provision of care for Huntington's disease (HD) across Europe. By harnessing information and communication technologies, eHealth can partially relocate care from specialized centers to the patients' home, thereby increasing the availability and accessibility of specialty care services beyond regional borders. Previous research on eHealth (development) in HD is however limited, especially when it comes to including eHealth services specifically designed together with HD gene expansion carriers (HDGECs) and their partners to fit their needs and expectations. Methods: This article describes the qualitative human-centered design process and first evaluations of the Huntington Support App prototype: a web-app aimed to support the quality of life (QoL) of HDGECs and their partners in Europe. Prospective end-users, i.e., HDGECs, their partners, and healthcare providers (HCPs), from different countries were involved throughout the development process. Through interviews, we captured people's experiences with the disease, quality of life (QoL), and eHealth. We translated their stories into design directions that were further co-designed and subsequently evaluated with the user groups. Results: The resulting prototype centralizes clear and reliable information on the disease, HD-related news and events, as well as direct contact possibilities with HCPs via an online walk-in hour or by scheduling an appointment. The app's prototype was positively received and rated as (very) appealing, pleasant, easy to use and helpful by both HDGECs and partners. Discussion: By involving end-users in every step, we developed a healthcare app that meets relevant needs of individuals affected by HD and therefore may lead to high adoption and retention rates. As a result, the app provides low-threshold access to reliable information and specialized care for HD in Europe. A description of the Huntington Support App as well as implications for further development of the app's prototype are provided.

The Role of Ophthalmology in Tele-Stroke Consults for Triaging Acute Vision Loss.

Advances in telemedicine have allowed physicians to provide care in areas that were previously geographically or practically inaccessible. Roughly 70% of all US hospital have less than 200 bed capacity and nearly 50% have fewer than 100 beds. These smaller hospitals often do not have specialists available for bedside patient care, making them potential beneficiaries of telemedicine medical specialty services. In 2005, the American Stroke Association proposed implementing telemedicine services in effort to increase access to acute stroke care in neurologically underserved areas such as small hospitals. Tele-stroke services have since become established across the country and are now utilized by approximately 30% of US hospitals. By reducing the time between presentation and evaluation by a stroke specialist, tele-stroke programs have successfully increased patient access to life-saving treatment with tissue-plasminogen activator (t-PA) treatments. This change has been especially profound remote and underserved community hospitals. However in the evaluation of acute vision loss, an area where ophthalmology and stroke care overlap, increased reliance on tele-stroke services has contributed to some unique challenges. Acute vision has a complex differential and is commonly a result of conditions other than stroke. When tele-stroke services are engaged for the evaluation of acute vision loss, the neurologist is asked to make medical decisions without complete information about the eye. This situation can expose patients to costly or inappropriate testing, unnecessary hospitalizations, or lead to delayed diagnosis and treatment of non-neurologic conditions of the eye. The goal of this paper is to provide an overview of the overlap between stroke and vision loss, highlight the challenges inherent in using tele-stroke in evaluating acute vision loss and to offer our comments on how increased communication between emergency medicine, ophthalmology, and neurology services can ensure that patients with vision loss receive the highest standard of care in all hospitals.

High acceptability, convenience and reduced carbon emissions of tele-neurology outpatient services at a regional referral centre in Kenya.

Background: There is severe shortage of neurologists in sub-Saharan Africa. Tele-neurology consultations (TNC) can bridge this service gap, but there is very little published evidence on TNC in our setting, which we addressed through our study. Methods: We prospectively enrolled patients at our neurology outpatients from October 2020 to October 2021. We administered a post-TNC questionnaire which captured satisfaction/acceptability using Likert scales. A sub-group of participants who also did in-person consultations (IPC) were additionally administered post-IPC questionnaires. Statistical comparisons were made using the paired student t-test, and descriptive data expressed as median (inter-quartile range). Results: From 219 enrolled patients, 66.7% participants responded: 74.0% had both IPC and TNC; 63.0% were female; age was 40.9 (30.6-55.2) years; and 2.7% were from neighbouring countries. The commonest presentations were headache (30.8%), seizures (26.0%) and neurodegenerative disorders (15.1%). For TNC, >90% found it: (i) as comfortable as IPC (p = 0.35); (ii) didn't violate their privacy; (iii) saved time [3.0 (2.0-4.0) hours], travel [11.0 (7.2-21.1) km] and cost [$9.09 (4.55-18.18)]; and (iv) addressed their concerns satisfactorily such that they would use TNC again. Conversely, 15.1% didn't agree with TNC being as effective as IPC, and felt the neurologist did not satisfactorily identify all of their health problems (p = 0.03). In total, our TNC service saved our patients $6167, 1143 h, and 25,506 km of travel, translating to 3.5 t (equivalent to 21 newly-planted trees) of carbon dioxide emissions. Conclusions: Our study demonstrates that TNC is an acceptable, efficient, effective, and environmentally-sustainable care delivery model.

Protocol for an economic evaluation of a tele-neurologic intervention alongside a stepped wedge randomised controlled trial (NeTKoH).

BACKGROUND: A significant and growing portion of the global burden of diseases is caused by neurological disorders. Tele-neurology has the potential to improve access to health care services and the quality of care, particularly in rural and underserved areas. The economic evaluation of the stepped wedge randomised controlled trial NeTKoH aims to ascertain the cost-effectiveness and cost-utility regarding the effects of a tele-neurologic intervention in primary care in a rural area in Germany. METHODS: This protocol outlines the methods used when conducting the trial-based economic evaluation of NeTKoH. The outcomes used in our economic analysis are all prespecified endpoints of the NeTKoH trial. Outcomes considered for the cost-utility and cost-effectiveness analyses will be quality-adjusted life years (QALYs) derived from the EQ-5D-5L, proportion of neurologic problems being solved at the GP's office (primary outcome), hospital length-of-stay and number of hospital stays. Costs will be prospectively collected during the trial by the participating statutory health insurances, and will be analysed from a statutory health insurance perspective within the German health care system. This economic evaluation will be reported complying with the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) checklist. DISCUSSION: This within-trial economic evaluation relaying the costs and outcomes of an interdisciplinary tele-consulting intervention will provide high-quality evidence for cost-effectiveness and policy implications of a tele-neurological programme, including the potential for application in other rural areas in Germany or other jurisdictions with a comparable health system. TRIAL REGISTRATION: German Clinical Trials Register (DRKS00024492), date registered: September 28, 2021.

Effect evaluation of a tele-neurologic intervention in primary care in a rural area in Germany-the NeTKoH study protocol of a stepped-wedge cluster randomized trial.

BACKGROUND: Neurological disorders account for a large and increasing proportion of the global burden of disease. Therefore, it is important to strengthen the management of neurologic care, particularly in rural areas. The use of tele-neurology in primary care in rural areas is internationally considered to have the potential to increase access to health care services and improve the quality of care in these underserved areas. NeTKoH aims to address the existing knowledge gap regarding the effects of a tele-neurologic intervention in primary care under real-world conditions in a rural area in Germany. METHODS: NeTKoH is a cluster-randomized controlled trial with a stepped-wedge design involving 33 outpatient general practitioner's (GP) offices (clusters) in a rural area in Northeast Germany. During 11 predetermined steps, all clusters are randomized before they cross over into groups from the control to the intervention arm. The targeted sample size is 1,089 patients with neurologic symptoms that are continuously being recruited. In the intervention arm, tele-neurologic consultations will be provided via a face-to-face video conferencing system with a neurologic expert at a university hospital. The control arm will receive usual care. The primary outcome is the proportion of neurologic problems being solved at the GP's office. Secondary outcomes will comprise hospital stays and days, time until neurologic specialist appointments and diagnostics, patients' health status and quality of life, outpatient and inpatient referrals. A concurrent observational study, together with a process, implementation, and health economic evaluation, will also be conducted. DISCUSSION: Using a stepped-wedge cluster design in a real-life situation can help with logistic challenges and enhance the motivation of the participating GPs, as all, at some point, will be in the intervention phase. With the additional implementation evaluation pertaining to external validity, an observational study, and a health economic evaluation, NeTKoH will be able to provide an extensive evaluation for health policy decision-makers regarding the uptake into standard care. TRIAL REGISTRATION: German Clinical Trials Register (DRKS00024492). Date registered: September 28, 2021. Date and protocol version: June 2023, version 1.

Experience and perception of utilizing virtual clinic in neurological assessment in Saudi Arabia.

Introduction: The World Health Organization defined electronic health as "the unified usage of information technology and electronic communications in the health sector." In the Kingdom of Saudi Arabia, outpatient encounters were largely shifted to virtual clinics due to the crisis caused by COVID-19. This study aimed to evaluate the neurology consultants', specialists', and residents' experience and perception of utilizing virtual services for neurological assessment in Saudi Arabia. Methods: This cross-sectional study was conducted by sending an anonymous online survey to neurologists and neurology residents in Saudi Arabia. The survey was developed by the authors and contained three main sections: demographics, subspecialty and years of experience after residency, and virtual clinics during the coronavirus disease 2019 (COVID-19) pandemic. Result: A total of 108 neurology-practicing physicians in Saudi Arabia responded to the survey. Overall, 75% experienced virtual clinics, and 61% of them used phones for consultation. In neurology clinical practice, there was a significant difference (P < 0.001) regarding the teleconsultations for follow-up patients compared to the newly referred patients, being more suitable for the follow-up cases. Additionally, most neurology practicing physicians showed more confidence in performing history-taking tasks virtually (82.4%) than in physical examination. However, it was found that consultants were significantly (P < 0.03) more confident to virtually perform the cranial nerve, motor, coordination, and extrapyramidal assessments than the neurology residents. Physicians deemed it more suitable to conduct teleconsultations for patients with headaches and epilepsy than for those with neuromuscular and demyelinating diseases/multiple sclerosis. Furthermore, they agreed that patients' experiences (55.6%) and physicians' acceptance (55.6%) were the two main limitations to implementing virtual clinics. Discussion: This study revealed that neurologists were more confident in performing history-taking in virtual clinics than in physical exams. On the contrary, consultants were more confident in handling the physical examination virtually than the neurology residents. Moreover, the most accepted clinics to be handled electronically were the headache and epilepsy clinics in comparison to the other subspecialties, being mainly diagnosed using history. Further studies with larger sample sizes are warranted to observe the level of confidence in performing different duties in neurology virtual clinics.

The future of neurology after the COVID-19 pandemic according to neurology residents.

BACKGROUND: The ongoing COVID-19 pandemic has resulted in significant changes in the delivery of neurological disease care and in neurology training in academic departments. OBJECTIVE: We aimed to investigate how neurology residents viewed the future of neurology after the COVID-19 pandemic with regard to three main aspects: (i) organization of neurological activity, (ii) patient care, and (iii) funding availability for neurological diseases. METHODS: We surveyed Italian neurology residents in order to investigate how they viewed the future of neurology after the COVID-19 pandemic. RESULTS: Responses were collected from 254 residents who reported: a high risk of reduction of hospital neurological beds, of worsening of the quality of neurological patient management, and of lack of funding for neurological care and research. CONCLUSION: The survey results demonstrate the views of future neurologists regarding the direction of neurology after the COVID-19 emergency. It is important to focus on these aspects in order to adapt neurology training to the societal changes introduced by the pandemic, and to safeguard the essential role of neurology in the management and prevention of chronic degenerative illnesses and emergencies.

European Academy of Neurology 2019 - 2022.

BACKGROUND: The EAN was founded in 2014 with the mission of reducing the burden of neurological disorders. METHODS: In 2019 the society defined four strategic priorities: education, science, membership, and advocacy. This paper reviews the EAN development in the last 3 years. RESULTS: The outbreak of COVID-19 pandemic in 2020 had a profound impact on the entire world and triggered profound changes in the EAN including the implementation of new digital technologies. Education The virtual congress in 2020 was the best attended in history (43,844 registrations). The European Training Requirements for Neurology was revised. A mentorship program and a student section were created. A state-of-the-art eLearning platform will be launched in 2022. Research To assess neurological manifestations of COVID-19 an international registry (ENERGY) was created. Studies on the burden of neurological disorders and sleep disorders, respectively, were started. The first EAN science school took place in 2022. Membership The EAN includes 45,000 members and 47 national societies. New task forces were created on gender and diversity, tele- and general neurology. Advocacy In 2022 the EAN supported the adoption of the Global Action Plan on epilepsy and other neurological disorders by the WHO and the neurological community in the Ukraine. The same year the EAN launched a Brain Health Strategy promoting a non-disease and -age centred, lifelong holistic approach ('one brain, one life, one approach'). CONCLUSION: The ongoing pandemic and wars demonstrate the fragility of our political and health systems and the need for people centeredness, international collaborations, solidarity, and digitalization. The EAN will continue promoting excellence in neurological care, science and education as well as brain health for all.

Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington's Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach.

Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home. Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts. Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD.

Myasthenia gravis and telemedicine: a lesson from COVID-19 pandemic.

COVID-19 pandemic has induced an urgent reorganization of the healthcare system to ensure continuity of care for patients affected by chronic neurological diseases including myasthenia gravis (MG). Due to the fluctuating nature of the disease, early detection of disease worsening, adverse events, and possibly life-threatening complications is mandatory. This work analyzes the main unresolved issues in the management of the myasthenic patient, the possibilities offered so far by digital technologies, and proposes an online evaluation protocol based on 4 simple tests to improve MG management. Telemedicine and Digital Technology might help neurologists in the clinical decision-making process of MG management, avoiding unnecessary in presence consultations and allowing a rational use of the time and space reduced by the pandemic.

Neurologists' perceptions of utilising tele-neurology to practice remotely during the COVID-19 pandemic.

OBJECTIVES: The COVID-19 pandemic enforced an almost complete switch from face-to-face clinical work to tele-neurology. This study explores neurologists' perceptions of telephone and videophone remote consultations. METHODS: Semi-structured interviews were conducted with neurologists and a GP with a specialist interest (n = 22). Interviews were conducted remotely via Zoom®, audio-recorded, transcribed verbatim and analysed using the principles of thematic analysis. RESULTS: Four main themes emerged: 'unknown unknowns (risks/uncertainties)', 'better service', 'challenges', and 'beyond the pandemic'. Thematic saturation was achieved by interview 19. Participants highlighted a number of benefits of remote consultations but over 80% also complained of a reduction in work satisfaction. CONCLUSION: The sudden introduction of tele-neurology is unlikely to be fully reversed when pandemic-related restrictions have been lifted. However, this study confirms tele-neurology cannot completely replace face-to-face consultations. Some patient groups and consultation types require direct contact. Moreover, significant administrative and infrastructural investment will be required to develop the full potential of tele-neurology. PRACTICE IMPLICATIONS: Tele-medicine is capable of improving access and efficiency of specialist neurology services, but limited by lack of non-verbal communication and technical problems. It could enhance service provision with sufficient infrastructural and administrative investment, but may reduce neurologists' job statisfaction.

COVID-19 impact on neurology training program in Italy.

The ongoing COVID-19 pandemic is having a huge impact on clinical activity of all hospitals, including the ones involved in training of residents. In addition, neurology residents underwent substantial modifications of their training program. Aim of our investigation was to evaluate the impact of COVID-19 pandemic on the educational activities of Italian neurology residents through an online questionnaire delivered to neurology residents. The results obtained showed that almost 30% of the respondents were redistributed to COVID-19 units. Neurology departments underwent substantial modifications of their organization influencing clinical educational activities; lessons and seminars were rescheduled online and research protocols were stopped and transferred to remote working, when feasible. There was a relevant use of telemedicine approach even if most of the respondents had never been trained before. Some of the changes had a North-South gradient, following the epidemiology of the pandemic. The data obtained from our survey highlight those points to address to be prepared for possible future emergencies.

Assessing disability and relapses in multiple sclerosis on tele-neurology.

BACKGROUND: As a consequence of the coronavirus disease 2019 (COVID-19) pandemic, a large amount of consultations will be delivered through tele-medicine, especially for diseases causing chronic disability and requiring immunomodulatory treatments, such as multiple sclerosis (MS). METHODS: We have hereby reviewed available tools for tele-neurology examination in MS, including components of neurological examination that can be assessed through video, patient-reported outcome measures (PROMs), and digital technology. RESULTS: Overall, we have suggested a battery for assessing MS disability and relapses on tele-medicine, which brings together conventional examination, PROMs (e.g., Patient Determined Disease Steps, MS Impact Scale), and cognitive tests (Symbol Digit Modalities Test) that can be delivered remotely and in multiple languages. DISCUSSION: The use of common tools for neurological examination could improve tele-neurology practice for both general neurologists and MS specialists, and quality of care for people with MS.

A Collaborative Tele-Neurology Outpatient Consulation Service in Karnataka: Seven Years of Experience From a Tele-Medicine Center.

BACKGROUND: Neurology services in rural and semi-urban part of India are very limited, due to poor infrastructure, resources, and manpower. Tele-neurology consultations at a non-urban setup can be considered as an alternative and innovative approach and have been quite successful in developed countries. Therefore, an initiative to bridge this health gap through Tele-Medicine has been taken by the Government of India. AIM: To study the sociodemographic and clinical profiles of patients who have received collaborative Tele-Neurology consultations from the Tele-Medicine Centre, National Institute of Mental Health and Neurosciences, Bengaluru. METHODOLOGY: We reviewed case files of such patients between December 2010 and March 2017. A total 189 collaborative tele-neurology outpatient consultations were provided through the Tele-Medicine Centre, located at a tertiary hospital-based research centre in southern India. RESULTS: The mean age of the patients was 39.6 (±19) years and 65.6% were aged between 19 to 60 years; 50.8% were male. The most common diagnosis was a seizure disorder in 17.5%, followed by cerebrovascular accident/stroke in 14.8%. Interestingly, 87.3% were found to benefit from tele-neurology consultations using interventions such as a change of medications in 30.1%, referral to a specialist for review in 15.8%, and further evaluation of illness and inpatient care for 7.93%. CONCLUSION: This study has demonstrated the successful implementation of outpatient-based collaborative tele neurology consultation in Karnataka.

Multidisciplinary Approach and Outcomes of Tele-neurology: A Review.

In rural and underserved areas, there are restrictions in healthcare due to the lack of availability of neurologists; patients have to travel long distances to receive the required care. Considering the fact that neurological conditions have large mortality and disability rates, there is a need for innovative services like tele-neurology. It is an important tool in improving the health and quality of life by using different ways of communication between neurologists and patients, or neurologists and other providers. We examine the current types of facilities available in tele-neurology, as well as outcomes, barriers, limitations, legal litigations, and the multidisciplinary nature based on prior studies. We have also suggested recommendations for the future of tele-neurology including effective-accessibility and inexpensive-utilization in developing countries. There are various tele-health programs created by The Veterans Health Administration including a clinical video tele-health (CVT) system. This system allows direct patient care of veterans by neurologists. The University of South Carolina implemented a web-based tele-stroke program in which acute ischemic stroke patients were treated in the Emergency Department (ED) of rural hospitals by neurologists, after consulting with rural ED physicians. With growing technology and popularity of tele-neurology, there are now international collaborative efforts in tele-medicine that are looking to be adapted to tele-neurology. Thus, tele-neurology can provide quality neurological care with patient satisfaction, as well as time and cost savings. The tele-stroke group established by TRUST-tPA trial (Therapeutic Trial Evaluating Efficacy of Telemedicine (TELESTROKE) of Patients With Acute Stroke) has 10 community hospital-emergency rooms that were connected to a stroke center. It was found that tele-stroke is appropriate in places where there is no way for a patient to access a stroke unit within a 4.5-hour time window. Like other tele-neurology subtypes, tele-epilepsy and pediatric tele-neurology also offer more follow-up care to people of remote areas which have limited access. There are other subtypes like mental health, chronic neurological care, and hospitalist which are very effective in improving outcome and quality of life of people living in remote areas. Tele-neurology has effectively reduced travel costs and times; there is high patient satisfaction and reduced disparity for general and specialized neurological care. But there are certain limitations like large equipment costs, certain bandwidth requirement, and trained staff to use the equipment. Transmission of patient information using public internet raises the concern of legality. There should be sufficient encryption to satisfy the Health Insurance Portability and Accountability Act (HIPAA) requirements to ensure patient confidentiality and safety of personal data. The adaptation of tele-neurology is a powerful and innovative way to enhance healthcare in areas with a shortage of specialists. Implementation of this tool is limited due to cost burden, lack of expertise to implement necessary technology, legal litigations, and suitable financial and professional incentives for the users. This review focuses on the trajectory of utilization and the issues to be addressed in order to provide the full benefits of tele-neurology to undeserved communities in the future.

Multidisciplinary care for people with Parkinson's disease: the new kids on the block!

INTRODUCTION: Parkinson's disease (PD) is a chronic multisystem disorder that causes a wide variety of motor and non-motor symptoms. Over time, the progressive nature of the disease increases the risk of complications such as falls and loss of independence, having a profound impact on quality of life. The complexity and heterogeneity of symptoms therefore warrant a holistic, multidisciplinary approach. Specific healthcare professionals, e.g. the movement disorders neurologist and the PD nurse specialist, are considered essential members of this multidisciplinary team. However, with our increasing knowledge about different aspects of the disease, other disciplines are also being recognized as important contributors to the healthcare team. Areas covered: The authors describe a selection of these relatively newly-recognized disciplines, including the specialist in vascular medicine, gastroenterologist, pulmonologist, neuro-ophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and the dentist. Furthermore, they share the view of a person with PD on how patients and caregivers should be involved in the multidisciplinary team. Finally, they have included a perspective on the new role of the movement disorder neurologist, with care delivery via 'tele-neurology'. Expert commentary: Increased awareness about the potential role of these 'new' professionals will further improve disease management and quality of life of PD patients.