The Impact of Upcoming Treatments in Huntington’s Disease: Resource Capacity Limitations and Access to Care Implications
| العنوان: | The Impact of Upcoming Treatments in Huntington’s Disease: Resource Capacity Limitations and Access to Care Implications |
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| المؤلفون: | Marsha Pelletier, Jean-Marc Burgunder, Marco Pedrazzoli, Kopano Mukelabai, Louisa Townson, Marina Ponomareva, Anna-Lena Nordström, Ralf Reilmann, Mark Guttman, Aaron Levine |
| المصدر: | Guttman, Mark; Pedrazzoli, Marco; Ponomareva, Marina; Pelletier, Marsha; Townson, Louisa; Mukelabai, Kopano; Levine, Aaron; Nordström, Anna-Lena; Reilmann, Ralf; Burgunder, Jean-Marc (2021). The Impact of Upcoming Treatments in Huntington's Disease: Resource Capacity Limitations and Access to Care Implications. Journal of Huntington's disease, 10(2), pp. 303-311. IOS Press 10.3233/JHD-200462 <http://dx.doi.org/10.3233/JHD-200462Test> Journal of Huntington's Disease |
| بيانات النشر: | IOS Press, 2021. |
| سنة النشر: | 2021 |
| مصطلحات موضوعية: | Research Report, 0301 basic medicine, health care facilities, 610 Medicine & health, and services, Intrathecal, Spinal Puncture, Health Services Accessibility, 03 medical and health sciences, Cellular and Molecular Neuroscience, 0302 clinical medicine, Resource (project management), Huntington's disease, Healthcare delivery, manpower, intrathecal injection, Health care, medicine, Humans, Health Workforce, Injections, Spinal, Health professionals, business.industry, capacity building, Capacity building, medicine.disease, health resources, Huntington Disease, 030104 developmental biology, Health Facilities, Neurology (clinical), Medical emergency, business, 030217 neurology & neurosurgery, Huntington’s disease, Healthcare system |
| الوصف: | 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 time 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. |
| وصف الملف: | application/pdf |
| تدمد: | 1879-6400 1879-6397 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5f11222ca8d9002ba30c2b786c16c27eTest https://doi.org/10.3233/jhd-200462Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....5f11222ca8d9002ba30c2b786c16c27e |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 18796400 18796397 |
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