MDS-082: Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome: Qualitative Insights via Online Bulletin Board (OBB) in the US, UK, and Canada

Abstract

Context: Research on the burden of caring for patients with advanced cancer suggests that there is insufficient support for caregivers, likely due to the lack of knowledge about their needs. The overall experience of caregivers for patients with MDS has not been evaluated to date. Objectives: Identify (1) key challenges for caregivers of patients with higher-risk MDS before, during, and after diagnosis and along the disease journey; (2) impacts on the caregiver’s life and well-being; and (3) impacts of decisions made, including treatments. Design: OBB via a web-based platform was used for data collection. A mix of moderator-led question-and-answer sessions and participant discussion provided the caregiver insights as online dialogue. Inclusion criteria: (1) caregiver of adult patients with high- or very high-risk MDS or intermediate-risk patients receiving hypomethylating agents and (2) proficiency in written English. Exclusion criteria: (1) caregiver of patient with lower-risk MDS, (2) caregiver of patient in a clinical trial, and (3) paid caregiver. Participants: Sixteen caregivers participated: 5 from the US, 6 from the UK, and 5 from Canada. Results: Findings from the OBB data revealed the strong impact and burden on caregivers of patients with higher risk-MDS, which varies depending on disease stage, the choice of treatments, and the caregiver’s personal situation. Although the caregiver role for more recently diagnosed patients is perceived as requiring minimal effort, their role increases considerably if the patient receives a stem cell transplant and/or if there are changes in the patient’s health status. Emotional stress is pervasive. This is amplified when healthcare providers are perceived to lack knowledge/expertise about MDS. Additional stress factors include the uncertainty of employment/financial burden, the time burden when balancing other commitments, and the impact on their own health. Conclusions: Although most caregivers can manage the physical and functional aspects of care, many caregivers state that the bigger unmet need for both patient and themselves is emotional support, which has not typically been part of the standard of care. Healthcare systems have an opportunity to provide better support in these areas of emotional burden.