Developing epilepsy training capacity for primary care providers using the project ECHO telementoring model

McDonald, Susan B.; Privitera, Michael; Kakacek, Jody; Owens, Steven; Shafer, Patty; Kobau, Rosemarie

doi:10.1016/j.yebeh.2021.107789

Cited by 12 publications

(5 citation statements)

References 10 publications

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“…One possible approach is the implementation of digital medical toolboxes to provide caregivers with an accessible system to consistently document their concerns for physician reference, particularly through the integration of video recordings or standardized online checklists [ 15 , 16 ]. Another option would involve creating a network of diverse specialists to share knowledge and resources among healthcare providers through teleconferencing and telementoring, an approach that has been operationalized for a variety of medical conditions through Project Extension for Community Healthcare Outcomes (Project ECHO) [ 17 – 20 ]. These approaches may help bridge the knowledge gap and bolster earlier physician validation of caregiver concerns [ 21 ].…”

Section: Discussionmentioning

confidence: 99%

The diagnostic journey of genetically defined neurodevelopmental disorders

Simon

Hyde

Saravanapandian

et al. 2022

J Neurodevelop Disord

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Background The development of advanced genetic technologies has resulted in rapid identification of genetic etiologies of neurodevelopmental disorders (NDDs) and has transformed the classification and diagnosis of various NDDs. However, diagnostic genetics has far outpaced our ability to provide timely medical counseling, guidance, and care for patients with genetically defined NDDs. These patients and their caregivers present with an unmet need for care coordination across multiple domains including medical, developmental, and psychiatric care and for educational resources and guidance from care professionals. After a genetic diagnosis is made, families also face several barriers in access to informed diagnostic evaluations and medical support. Methods As part of Care and Research in Neurogenetics (CARING), a multidisciplinary clinical program for children and adults with neurogenetic disorders, we conducted qualitative clinical interviews about the diagnostic journey of families. This included the overall timeline to receiving diagnoses, experiences before and after diagnosis, barriers to care, and resources that helped them to navigate the diagnostic process. Results A total of 37 interviews were conducted with parents of children ages 16 months to 33 years. Several key themes were identified: (1) delays between initial caregiver observations and formal developmental or genetic diagnoses; (2) practical barriers to clinical evaluation and care, including long wait times for an appointment, lack of insurance coverage, availability of local evaluations, transportation difficulties, and native language differences; (3) the importance of being part of a patient advocacy group to help navigate the diagnostic journey; and (4) unique challenges faced by adults (18 years or older). Conclusions Families of children with complex neurodevelopmental and genetic disabilities face numerous challenges in finding adequate medical care and services for their child. They experience considerable delays in receiving timely diagnoses and face significant barriers that further delay the process of receiving access to services needed for the child’s continued care. The gaps indicated in this study speak to the need for more comprehensive coordination of care for patients with intellectual and developmental disabilities, as well as the development of systematic, disorder-specific resources both for providers and families in order to improve patient outcomes.

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Section: Discussionmentioning

confidence: 99%

The diagnostic journey of genetically defined neurodevelopmental disorders

Simon

Hyde

Saravanapandian

et al. 2022

J Neurodevelop Disord

View full text Add to dashboard Cite

show abstract

“…Qualitative assessments of provider measures consistently demonstrate improvements in reported self-efficacy, knowledge, and professional satisfaction. 17,18,35,[37][38][39][40][41][42][43][44][45][46][47][48] A smaller number of studies have documented that Project ECHO leads to reduced time to specialist consultation, distance to care, emergency department visits, hospital admissions, and health care costs. 20,21,23,27,48 However, relatively few studies have evaluated Project ECHO's impact on patient-level clinical outcomes.…”

Section: Discussionmentioning

confidence: 99%

Direct and Indirect Effects of a Project ECHO Longitudinal Clinical Tele-Mentoring Program on Viral Suppression for Persons With HIV: A Population-Based Analysis

Wood

Bauer²,

Lechtenberg

et al. 2022

JAIDS Journal of Acquired Immune Deficiency Syndromes

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“…One possible approach is the implementation of digital medical toolboxes to provide caregivers with an accessible system to consistently document their concerns for physician reference, particularly through the integration of video recordings or standardized online checklists [15,16]. Another option would involve creating a network of diverse specialists to share knowledge and resources among healthcare providers through teleconferencing and telementoring, an approach that has been operationalized for a variety of medical conditions through Project Extension for Community Healthcare Outcomes (Project ECHO) [17,18,19,20]. These approaches may help bridge the knowledge gap and bolster earlier physician validation of caregiver concerns [21].…”

Section: Discussionmentioning

confidence: 99%

The Diagnostic Journey of Genetically Defined Neurodevelopmental Disorders

Simon¹,

Hyde²,

Saravandapandian³

et al. 2021

Preprint

View full text Add to dashboard Cite

Background The development of advanced genetic technologies has resulted in rapid identification of genetic etiologies of neurodevelopmental disorders (NDDs) and has transformed the classification and diagnosis of various NDDs. However, diagnostic genetics has far outpaced our ability to provide timely medical counseling, guidance, and care for patients with genetically defined NDDs. These patients and their caregivers present with an unmet need for care coordination across multiple domains including medical, developmental, and psychiatric care, and for educational resources and guidance from care professionals. After a genetic diagnosis is made, families also face several barriers in access to informed diagnostic evaluations and medical support. Methods As part of Care and Research in Neurogenetics (CARING), a multidisciplinary clinical program for children and adults with neurogenetic disorders, we conducted qualitative clinical interviews about the diagnostic journey of families. This included the overall timeline to receiving diagnoses, experiences before and after diagnosis, barriers to care, and resources that helped them to navigate the diagnostic process. Results A total of 37 interviews were conducted with parents of children ages 16 months to 33 years. Several key themes were identified: 1) delays between initial caregiver observations of developmental delays and formal developmental or genetic diagnoses; 2) practical barriers to clinical evaluation and care, including long wait times for an appointment, lack of insurance coverage, availability of local evaluations, transportation difficulties, and native language differences; 3) the importance of being part of a patient advocacy group to help navigate the diagnostic journey; and (4) unique challenges faced by adults (18 years or older). Conclusions Families of children with complex neurodevelopmental and genetic disabilities face numerous challenges in finding adequate medical care and services for their child. They experience considerable delays in receiving timely diagnoses and face significant barriers that further delay the process of receiving access to services needed for the child’s continued care. The gaps indicated in this study speak to the need for more comprehensive coordination of care for patients with intellectual and developmental disabilities, as well as the development of systematic, disorder-specific resources both for providers and families in order to improve patient outcomes.

show abstract

Developing epilepsy training capacity for primary care providers using the project ECHO telementoring model

Cited by 12 publications

References 10 publications

The diagnostic journey of genetically defined neurodevelopmental disorders

The diagnostic journey of genetically defined neurodevelopmental disorders

Direct and Indirect Effects of a Project ECHO Longitudinal Clinical Tele-Mentoring Program on Viral Suppression for Persons With HIV: A Population-Based Analysis

The Diagnostic Journey of Genetically Defined Neurodevelopmental Disorders

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