Understanding illness experiences of patients with primary sclerosing cholangitis: a qualitative analysis within the SOMA.LIV study.

Caroline Loesken,Kerstin Maehder,Laura Buck,Johannes Hartl,Bernd Löwe,Christoph Schramm,Anne Toussaint

BMC gastroenterology（2023）

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摘要

The present study provides an in-depth look at the fluctuating tensions arising from a life with PSC. Insights on perceived invisibility, disease-related triggers of emotional distress and the complexity behind self-management highlight opportunities for enhanced clinical support of this patient group.

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Cholestatic liver disease,Chronic illness,Coping,Impact of illness,Interviews,Patient experience,Rare disease,Thematic analysis

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