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 sel...

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Bibliografische gegevens

Hoofdauteurs:	Jennifer Langhinrichsen-Rohling, Chrystal L. Lewis, Sean McCabe, Emma C. Lathan, Gabrielle A. Agnew, Candice N. Selwyn, Margaret E. Gigler
Formaat:	Artigo
Taal:	Inglês
Gepubliceerd in:	SAGE Publishing 2021-06-01
Reeks:	Therapeutic Advances in Rare Disease
Online toegang:	https://doi.org/10.1177/26330040211022033
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