They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations

INTRODUCTION: Patients with rare and/or care-intensive conditions, such as Ehlers-Danlos Syndrome (EDS), can pose challenges to their healthcare providers (HCPs). The current study used the BITTEN framework(1) to code EDS patients’ open-ended written responses to a needs survey to determine their se...

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Detalles Bibliográficos
Autores principales: Langhinrichsen-Rohling, Jennifer, Lewis, Chrystal L., McCabe, Sean, Lathan, Emma C., Agnew, Gabrielle A., Selwyn, Candice N., Gigler, Margaret E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Original Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10032464/
https://www.ncbi.nlm.nih.gov/pubmed/37181101
http://dx.doi.org/10.1177/26330040211022033

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