Study Highlights Need for Additional Caregiver Support in Higher-Risk MDS

A small study of people caring for patients with higher-risk myelodysplastic syndromes (MDS) is putting a spotlight on the burden facing caregivers.

The study, which pulled self-reported data from online bulletin boards across the US, Canada, and the United Kingdom in 2020, found that the degree of burden varied based on a patient’s disease stage, among other factors. These findings appear in a recent issue of Oncology and Therapy.

“This is the first qualitative research of this nature in caregivers of patients with higher-risk MDS. It uncovers important themes that impact the caregiver’s physical and mental well-being, and potentially that of the patient, if the ‘care of caregivers’ is inadequate to enable them to continue to function optimally in their role,” explained the researchers.

Meylodysplastic syndrome | Image Credit: syahrir - stock.adobe.com

Seven key categories of caregiver burden were surveyed among the 16 participants, ranging from mental health to health care professional interaction. Most caregivers included in the study were female and White, potentially limiting the generalizability of the findings.

Although most caregivers reported being able to manage the physical aspects of care, emotional and mental burdens were apparent. In particular, caregivers cited emotional stress throughout the diagnosis and prognosis stage. The “watch and wait” period was also cited by caregivers, providing both the patient and caregiver “significant stress” with no treatment being offered. Uncertainty of employment and the financial impact were highlighted by caregivers, as well as the impact of their caregiver role on their own health.

The choice, or lack of, treatment played a significant role in the caregiver experience. Outside of limited treatment choices, minimal disease control with treatments like hypomethylating agents (HMAs) or significant and unexpected burdens with treatments like transplant contribute to the overall burden. In certain cases, the caregiver may serve as the sole decision maker for the patient.

“Patients with higher-risk MDS are predominantly elderly with clinical comorbidities and have limited treatment options. HMAs and transfusion therapy offer limited efficacy with burdensome administration and/or side effects,” wrote the researchers. “More effective treatments such as [allogeneic hematopoietic stem cell transplant] are available to few patients and present a significant treatment burden. A recently published study suggested that MDS has a significant impact on the [quality of life] and mental health of patients with MDS and their caregivers. Interestingly, the burden of MDS was found to be more severe for caregivers than for patients in some areas, such as planning and uncertainty about the future.”

Interaction and experience with the health care professional was also explored, with caregivers reporting burden if it was perceived that the health care professional seemed to lack knowledge or expertise about MDS outside of MDS Centers of Excellence. Poor communication was cited, leaving some caregivers feeling “helpless” and “paralyzed.”

Although not yet studied in patients with higher-risk MDS, the impact of caregiver support on patient outcomes has been explored, revealing improved outcomes associated with the consistent support. The researchers cited a prospective Cleveland Clinic study of over 160 care partners who spent at least 5 days each week with a patient undergoing allogeneic bone marrow transplant. For 2003 to 2008, data show that patients who had a care partner had significantly improved overall survival and relapse-free survival compared with patients who did not.

The group highlighted various areas of opportunity for improvement in the caregiver experience, including MDS disease and treatment education for nonspecialists, a caregiver toolkit recognizing the important role they play and support tools, and tailored information and education for patients/caregivers that can be easily accessed.

Reference

Frank P, Olshan A, Iraca T, Anthony C, Wintrich S, Sasse E. Experiences and support needs of caregivers of patients with higher-risk myelodysplastic syndrome via online bulletin board in the USA, Canada, and UK. Oncol Ther. Published online December 7, 2023. doi:10.1007/s40487-023-00253-4