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New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients
A new paper published in Lancet eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).
The paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.
Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).
The survey focused on questions surrounding caregivers’ overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.
It has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine “meaning making” with rare diseases, such as ECD.
The paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.
The unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual’s ability to derive meaning and benefit from their role as a caregiver.
From the paper:
“Rare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.”
The outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care.
“While the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,” said Jessica Corkran, ECDGA Executive Director. “We hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.”
For those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like to join us!
For more information on ECDGA Care Giver Support visit: https://erdheim-chester.org/caregiver-carer/
