Determining patient and carer priorities in inclusion body myositis: a patient-led research study.

Objectives: Inclusion body myositis (IBM) is a rare neuromuscular disease that confers significant functional disability. Understanding the priorities of IBM patients and carers is critical to directing care interventions where resources are limited. This Australian patient-led study aimed to identify current challenges for IBM patients and carers; prioritisation of these challenges; and self-reported ability to cope.