“Our patients’ goals for their care aren’t always the same as ours. We’re typically focused on disease control, and they’re often focused on quality of life. Having ongoing discussions about care goals is the only way to know when it’s time to switch gears. Would you know when to refer your patients to palliative care? For an example of what can happen when that aspect of care gets overlooked, read our article, ‘Palliative Care for IBM,’ in the September issue of
The Rheumatologist ,” says Physician Editor Bharat Kumar, MD, MME, FACP, FAAAAI, RhMSUS.
Inclusion body myositis (IBM) is a slowly progressing muscle disease of unknown cause that currently has no effective treatment. IBM is the most common inflammatory myopathy in older individuals, with a rising prevalence of 18.2 per 100,000 in adults older than 50.1,2 The disease characteristically affects the quadriceps and finger flexors, and in later stages it can affect diffuse muscle groups, leading to significant physical disability. Dysphagia is a prominent symptom, often resulting from esophageal strictures and muscle weakness, and can lead to recurrent aspirations and malnutrition. The disease progresses slowly, often resulting in a delay in diagnosis, with some studies suggesting a gap of 4–5.6 years between symptom onset and diagnosis.3,4 Consequently, individuals often face significant loss in functional status, psychological distress and may have been exposed to unnecessary or inappropriate interventions by the time they are diagnosed.
