Determining patient and carer priorities in inclusion body myositis: a patient-led research study
Authors' conclusion
This study identified gaps in care, education and support. The highest priority themes focussed on practical challenges of living with IBM in addition to significant impact on mental health.
Study context
- Population
- Australian inclusion body myositis (IBM) patients and carersn=23 discovery
- Outcome
- Current challenges for IBM patients and carers, their prioritisation, and self-reported ability to cope
Methodological detailspatient-led, phased, qualitative discovery phase, online survey quantification phase
- Patient-led
- Phased
- Qualitative discovery phase
- Online survey quantification phase
Main finding
As reported in the abstract
Inter-related themes identified
10
Share of total importance from 7 themes: uncertain future; coping with daily frustrations; lack of cure, treatment and understanding; impact on carer's capabilities and own needs; change of roles and relationships; getting information, education and support; significant impact on mental health
95%
Observational data: associations, not effects.
Original publication
Determining patient and carer priorities in inclusion body myositis: a patient-led research study. Clin Exp Rheumatol. Published 25 November 2024. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →