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

Abstract

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 depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.

Keywords:

• Myeloid leukemias and dysplasias
• histiocytosis
• Erdheim-Chester disease
• cancer caregivers

Author contributions

A Applebaum, S Benvengo, J Buthorn, E Diamond collected the data. A Applebaum, LC Polacek, L Walsh, A Reiner, K Lynch, T Atkinson, J Mao, K Panageas, E Diamond analyzed and interpreted the data. A Applebaum, LC Polacek, L Walsh, A Reiner, K Lynch, S Benvengo, J Buthorn, T Atkinson, J Mao, K Panageas, E Diamond wrote the manuscript. All authors approved the final manuscript.

Acknowledgements

We are grateful to the Erdheim–Chester Disease Global Alliance for continued support of our work and referring participants to research studies.

Disclosure statement

KS Panageas reports stock ownership in Johnson & Johnson, Viking Therapeutics, Catalyst Biotech, and Pfizer, outside of the submitted work. EL Diamond reports non-financial support from Third Rock Ventures, outside the submitted work. All other authors report no conflict of interest.

Additional information

Funding

This study was supported by the Population Sciences Research Program Award (NIH P30 CA008748; MSK Core Grant), NIH T32 CA009461 (Jamie Ostroff- Research Fellowship), Frame Family Fund, and Joy Family West Foundation.