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.

Methods: This phased study used a mixed methods approach. An initial qualitative 'discovery' phase, involving a small cohort of patients and carers (n=23), determined key challenges (themes). A subsequent quantification phase, involving 149 Australian IBM patients and carers, utilised an online survey to prioritise themes and determine current level of coping.

Results: The study identified 10 inter-related themes, and their relative importance was then determined. Ninety-five percent of total importance came from 7 themes: (1) Uncertain future; (2) Coping with daily frustrations; (3) Lack of cure, treatment and understanding; (4) Impact on carer's capabilities and own needs; (5) Change of roles and relationships; (6) Getting information, education and support; and (7) Significant impact on mental health. Other themes identified were: (8) Financial impact; (9) Issues with government-provided care provision; and (10) Concerns around access to voluntary euthanasia. Participants reported low mean 'coping scores' across all themes.

Conclusions: 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. Understanding the priorities of IBM patients and carers is critical in directing resources and providing person-centered care and support.