Inclusion body myositis-health-related quality of life and care situation during phases of the "patience journey" in Germany: results from a qualitative study.

ABSTRACT:

Background

To understand the health-related quality of life (HRQoL) in inclusion body myositis (IBM) from a holistic perspective on the background of a complex care situation. The focus was on how the patient journey may be structured over the course of this rare disease.

Methods

An exploratory qualitative study was performed via in-depth semi-structured interviews. Seven patients (males n = 5) with 2011 European Neuromuscular Centre (ENMC) IBM criteria from the German IBM patient registry were interviewed for this study. The dynamic network approach of resilience and the throughput-model of health services research were used to structure the qualitative analysis.

Results

Our results suggest that IBM patients experience the holistic HRQoL and care situation typically

SUBMITTER: Senn KC 

PROVIDER: S-EPMC10566017 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature