Utilizing telehealth to create a clinical model of care for patients with Batten disease and other rare diseases.

The COVID-19 pandemic transformed the delivery of healthcare across the world. Telehealth has emerged as the primary method for providing healthcare early in the pandemic. Patient and healthcare provider views of the effectiveness of telehealth services are encouraging and support the long-term use of telehealth services in clinical practice. Telehealth may provide a strategy that has far-reaching benefits for diverse patient populations, such as patients with Batten disease and other rare diseases, who face additional barriers to accessing subspecialty healthcare services. The aims of this paper, through the experience of a single Batten Disease Center of Excellence, are to (1) review the benefits and barriers involved in the delivery of telehealth services to patients with rare diseases; (2) discuss components of a model for clinical care that utilizes telehealth services for patients with Batten disease; (3) discuss limitations and future directions of using telehealth in patients with rare diseases. Healthcare systems should consider building clinical models that utilize telehealth services to provide multidisciplinary services to patients with rare diseases. There are numerous benefits in using telehealth that can enhance and expand service delivery between the patient and clinician. Telehealth services can also improve provider-to-provider communication and collaboration when providing clinical care to individuals with rare diseases. Although there are many benefits to utilizing telehealth services in provision of care to patients with rare diseases, it is important to consider factors that may limit or add additional barriers prior to implementing telehealth services. There is a need for future collaborative research to examine and compare the effectiveness and outcomes of telehealth services with standard of care services that are provided in-person. Future research should also examine how to reduce the challenges and barriers associated with the implementation of telehealth services. Plain language summary: What is telehealth? Telehealth is defined by the US Department of Health Resources and Services Administrations1 as the "use of electronic information and telecommunication technologies to support long-distance clinical healthcare, patient and professional health-related education, public health, and health administration. Technologies include video conference, the internet, store-and-forward imaging, streaming media, and terrestrial and wireless communication." What was the aim of this review? This review was conducted to guide a clinical model using telehealth services for patients with Batten disease and other rare diseases based on the experiences of a single Batten Disease Center of Excellence. Why is this important? Individuals with rare diseases may face multiple barriers to accessing clinical services. Local doctors and treatment providers, such as speech therapists, occupational therapists, physical therapists, and psychologists, may not have knowledge of rare diseases or how to manage symptoms and disease progression, or how to guide treatment services. Other barriers may also include:• Lack of local resources;• Increased caregiver stress;• Difficulty obtaining a correct diagnosis.There are numerous benefits to using telehealth services for both patients with rare diseases, such as:• Convenience;• Cost savings;• Improved access to care;• Ability to see multiple providers that can help with symptom monitoring, assessment, and treatment services. Where do we go from here? It is important to consider limitations when creating a model for clinical care for patients with rare diseases. Some limitations to think about are:• Clinician and organization familiarity with telehealth;• Reimbursement and coverage from insurance companies for telehealth;• Security and privacy of patient information;• Training of telehealth providers;• Logistical factors, including use of equipment, internet/connectivity, and technical troubleshooting.Future directions should involve collaborative research that studies the effectiveness, feasibility, and perceptions of families of rare diseases and providers that use telehealth for clinical healthcare services. Research should also further study and consider ways to improve barriers and challenges associated with implementing telehealth systems into existing healthcare systems.

Provider Perspectives on Telehealth Services for Children With Autism Spectrum Disorder During the Coronavirus Disease 2019 Pandemic.

OBJECTIVE: The purpose of the current study was to explore provider perspectives on the strengths and challenges of telehealth services (e.g., behavioral interventions, physical, speech, and occupational therapy, medication management) for children with autism spectrum disorder during coronavirus disease 2019 related shutdowns. METHODS: From September 2020 to May 2021, we conducted qualitative interviews with 35 providers across multiple disciplines from 17 sites in the Autism Care Network. Qualitative data were analyzed using a framework approach and common themes were identified. RESULTS: Providers across clinical disciplines identified strengths of the virtual model, such as its flexibility and the opportunity it provided to see children in their home environment. They also indicated that some interventions worked better virtually than others, and that there were several factors that impacted their success. Respondents were generally satisfied providing parent-mediated interventions but expressed mixed satisfaction in using telehealth for direct-to-patient care. CONCLUSIONS: Results suggest that telehealth services for children with autism spectrum disorder could be a helpful tool in decreasing barriers and improving service delivery, especially when tailored to the individual needs of the patient. More research is needed on the factors contributing to its success in order to eventually inform clinical guidelines regarding the prioritization of children seen for in-person visits.

Clinician Perspectives on Telehealth Assessment of Autism Spectrum Disorder During the COVID-19 Pandemic.

This study examined clinician insights into telehealth assessment services for autism spectrum disorder implemented during the COVID-19 pandemic. 35 clinicians from multiple disciplines across 17 sites in the Autism Care Network were interviewed. Themes identified through qualitative analyses included factors related to confidence in diagnosis (impressions of in-home observation; child and family factors that affected diagnostic confidence; changes in rapport); patient and family factors related to telehealth (perceived family benefits of and barriers to telehealth; factors related to healthcare disparities; factors specific to non-native English speakers); and institutional and workplace factors related to transitioning to telehealth (institutional support; changes to efficacy, attendance, and work satisfaction). Results suggest that telehealth has potential to be an effective tool in autism assessment practice.