The unique burden of rare cancer caregiving: caregivers of patients with Erdheim–Chester disease

Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim–Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one’s care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and...