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The OBB was the qualitative research methodology used. OBB enables data collection via a web-based platform. This innovative type of online focus group can generate more meaningful and impactful insights compared to traditional focus groups. A mix of moderator-led Q&A and participant discussion provides the caregiver insights as online dialogue. OBB is advantageous when participants are located in various geographic locations, time zones, and availabilities. Additionally, such a virtual platform meant the research was not disrupted despite being conducted during the COVID-19 pandemic. Inclusion criteria: (1) caregiver of adult pt with high- or very high-risk MDS as diagnosed per IPSS-R category or high-risk MDS as per IPSS, or intermediate-risk pts on hypomethylating agents, and (2) Proficiency in written English. Exclusion criteria: (1) Caregiver of pt with lower-risk MDS; (2) caregiver of pt in a clinical trial; and (3) Paid caregiver.

The findings highlight a significant impact and burden on caregivers of pts with higher-risk MDS, which varies depending on the stage of the disease, the choice (or lack of choice) of treatments, and the personal situation of the caregiver. For example, although the caregiver role for more recently diagnosed pts is perceived as minimal effort, their role increases significantly if a stem cell transplant occurs, and/or if there are changes in the pt’s health status (eg, infection, medication change, managing side effects). Emotional stress is pervasive, especially at diagnosis and prognosis stage, and when told to “watch and wait.” This is amplified when HCPs are perceived to lack knowledge/expertise about MDS, resulting in additional burden to pts and caregivers as they seek more appropriate care. There is a strong need for mental health support for both pt and caregiver. The extent required depends on the personal situation and dynamics of the pt and caregiver. Additional stress factors include the uncertainty of employment and financial burden; the time burden when balancing other commitments; and the impact on their own health, particularly if they have their own health issues to manage. Most caregivers can manage the physical and functional aspects of care; however, many state that the bigger unmet need for both pt and caregiver is emotional support, which has not typically been part of the standard of care provided to MDS pts. There is thus an opportunity for healthcare systems to provide better support in these areas of emotional burden.