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Online Workshop Reveals Patient, Future Research Priorities in MDS
Myelodysplastic syndrome is an extremely heterogeneous disease, and there is no definitive cure, so these investigators wanted a better understanding of patients’ priorities regarding their care, quality of life, and communication with the care team.
Participation in an online workshop mean to elicit greater understanding of patient priorities in the setting of myelodysplastic syndromes (MDS) uncovered that patients place high value on shared decision-making, research, disease prediction, and supportive care when living with this rare blood cancer.
There is no definitive cure for this disease, and “limited appreciation of the heterogeneity of the disease or the trajectory of patients’ journeys with MDS in current written patient information,” the authors wrote in Frontiers in Medicine. Their 2-part workshop enabled the 14 patient participants from local and national support groups in the United Kingdom to generate 56 questions regarding their care priorities that fell under 6 themes: prognosis, end of life, treatment, supportive care, medical staff training, and diagnosis and communication.
The median patient age was 72 years, and because the interviews were conducted over Zoom, the authors decided on a 2-part workshop, with each session being 2.5 hours and meant to combat likely fatigue in their older patients. In the first session, small group, open, nondirected discussions in generated the questions, which were then grouped under the mentioned themes, and before the second session, participants again could contribute if they felt something had not been addressed. Discussion and voting on topic importance encompassed much of the second session to finalize the list of priorities.
The 14 questions that came out of the priority voting, the investigators noted, demonstrate the importance to patients of living well with their MDS, understanding supportive therapies and the rationale for using them, and being treated per their symptoms instead of their blood test results:
- How can we more accurately predict an individual’s prognosis?
- Can we predict what treatment pathways will mean for quality of life (QOL)?
- Can we better adapt survival predictions as the disease progresses?
- Is there an alternative to stem cell transplant as a curative treatment?
- How can we better address fatigue management?
- How do we improve communications between medical teams to ensure integrated care?
- How can we predict and communicate what end of life might look like for someone with MDS?
- How can we ensure better communication about MDS biology and its complexity for all patients and those that know them?
- How can we ensure that all people with MDS have good quality evidence-based information to support shared decision-making?
- How can we ensure that the diagnosis and management of MDS is not compromised by assumptions about patient age?
- Is it possible to explore the potential for DNA direct-to-consumer analysis to inform potential bone marrow matches?
- Can we create personalized information packages to account for individual disease characteristics/prognostic factors?
The authors explained that despite previous research showing hemoglobin (Hb) levels in MDS correlating to QOL, their findings clearly demonstrate that other factors are just as important and that “optimal benefit and timing of transfusions cannot be determined from Hb level alone.”
They also highlighted the inherent difficulty in managing MDS and why different perspectives are important when considering how to optimize transfusion strategy to comprehensively address QOL and MDS-related fatigue. “Interestingly, the question of a cure for MDS was only raised towards the end of the workshop, illustrating that patients prioritize QOL,” the authors wrote.
Next steps in their research involve conducting another workshop in a different part of the United Kingdom to see if similar conclusions are reached in other sets of patients through which they hope to continue empowering patients to highlight what matters most to them.
That feedback, they wrote, has potential to direct future research and patient benefits.
“Patient engagement is important to improve shared decision-making and research prioritization,” the authors concluded. “Preexisting technology and future trials need to focus on predicting disease course and maximizing the benefits of interventions of supportive care.”
Reference
Poynton M, Gilmour-Hamilton C, Dale Harris I, et al. The future of myelodysplastic syndrome-patient priorities and outcomes that matter. Front Med (Lausanne). 2023:10:1267139. doi:10.3389/fmed.2023.1267139
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