Experiences and Support Needs of Caregivers of Patients with Higher-Risk MDS: Qualitative Insights Via Online Bulletin Board in the US, UK, and Canada

Higher-risk MDS patients and caregivers can face many challenges in the course of the disease and disease management. Patients with advanced cancer and their caregivers can both experience physical, emotional, social, spiritual, and functional issues. Research on the burden of caring for advanced cancer patients suggest that there is insufficient support for caregivers, which might be due to the lack of knowledge about their needs and burdens (Friðriksdóttir et al. 2011; Chambers et al. 2012; Sklenarova et al. 2015). The overall experience of caregivers for MDS patients has not been evaluated to date.

Our key research questions are related to:

• Caregiver role before, during, and after diagnosis; and along the disease journey

• Impact on the caregiver's life and well-being; consequently their areas of need for support

• Impact of decisions made, including treatments

We used the online bulletin board (OBB) as the qualitative research methodology for this research. 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 (Reid et al. 2005). A mix of moderator-led Q&A and participant discussion will provide the caregiver insights as online dialogue. OBB is especially advantageous when participants are located in various geographic locations, time zones, and with differing availabilities (Rolland et al. 2013; Nyumba et al. 2018). This methodology will guide the caregiver discussions, optimize the gathering of caregiver insights, and facilitate interactive activities, including appropriate probes and follow up questions.

Since it would be challenging to identify caregivers of higher-risk MDS patients, the research uses convenience sampling with the support of patient organizations. Fifteen participants were targeted for recruitment by patient organizations in their respective countries - Myelodysplastic Syndromes (MDS) Foundation in the US, Aplastic Anemia & Myelodysplasia Association of Canada, and MDS UK Support Group - through outreach to their membership. Participants were to be selected based on the inclusion and exclusion criteria, with additional screening by the researchers.

Inclusion criteria

• Caregiver of patient diagnosed with high or very high risk MDS as diagnosed per IPSS-R category or high-risk MDS as per IPSS (intermediate-risk patients on hypomethylating agents (HMAs) will be considered only if it is challenging to recruit caregivers of high and higher-risk patients)

• Aged 18+

• Able to communicate in written English

• Caregiver is able to provide consent to participate in research

Exclusion criteria

• Caregiver of patient diagnosed with low or very low risk MDS as diagnosed per IPSS-R category or low-risk as per IPSS

• Caregiver of patients currently active in a clinical trial

• Paid caregiver who is a nurse or aide

We present in this abstract an interim report of the research, which is still ongoing. A total of 16 caregivers participated in the OBB with additional recruitment to cover any potential drop outs or withdrawals - 5 from the US, 6 from the UK, and 5 from Canada. There are 14 female and 2 male caregivers whereby 13 are spouses of the patient, 2 are children of the patient, and 1 is a friend of the patient.

Full content analysis will be conducted at the completion of the research. However the interim findings already indicate there are unmet patient and caregiver needs in higher-risk MDS. For example, although the caregiver role for more recently diagnosed patients (≤ 1 year) is perceived as minimal effort, their role increases significantly if a stem cell or bone marrow transplant occurs, and/or if there are changes in the patient's health status (e.g. infection, medication change, managing side effects like nausea). The implications of this vary depending on the personal situation of the caregiver - the ability to continue in any employment and financial consequences if not; the demand on their time if they are balancing family and 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 patient and caregiver is emotional support, which has not typically been part of the standard of care provided to MDS patients.