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

BMC Gastroenterology

Research

Johannes Hartl¹  Christoph Schramm²  Laura Buck³  Bernd Löwe³  Caroline Loesken³  Kerstin Maehder³  Anne Toussaint³ 

[1] 1st Department of Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;Hamburg Center for Translational Immunology (HCTI), Hamburg, Germany;1st Department of Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;Martin Zeitz Center for Rare Diseases, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;Hamburg Center for Translational Immunology (HCTI), Hamburg, Germany;Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;

关键词: Chronic illness;    Rare disease;    Cholestatic liver disease;    Interviews;    Thematic analysis;    Patient experience;    Impact of illness;    Coping;   

DOI  :  10.1186/s12876-023-02645-2

 received in 2022-10-06, accepted in 2023-01-09,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundPrimary sclerosing cholangitis (PSC) is a rare cholestatic liver disease with a largely unpredictable course. Due to limited treatment options, individuals may for many years suffer from distressing symptoms and the emotional burden of an uncertain future. The need to shift from cure to care of PSC has spurred an interest into patients’ health-related quality of life. Qualitative research in this context remains scarce. Hence, this study aimed to enrich the clinical understanding about the lived experience of PSC through a qualitative approach.MethodsA total of 20 patients with PSC were recruited at a specialist centre for autoimmune liver disease in Germany and engaged in semi-structured telephone-based interviews between March and June 2022. Verbatim transcripts were interpreted using inductive thematic analysis.ResultsAn overarching concept of ‘a wave-like experience’ was formulated to illustrate the dual and shifting nature of living with PSC. Reflecting upon this central idea, three major themes were generated to address important aspects of participants’ illness experiences: ‘Invisible presence’ focused on perceptions of suffering from a seemingly hidden illness that periodically reveals itself through specific trigger events. ‘Embracing the threat’ captured the psycho-emotional response shift to this chronic disease from a predominantly negative to a coping-oriented pattern with regular setbacks. ‘Between control and constraints’ uncovered restrictions that PSC enforces onto patients’ lives and their desire for controllability.ConclusionsThe 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.

【 授权许可】

CC BY   
© The Author(s) 2023

【 图 表 】

Fig. 4