Patients with higher-risk myelodysplastic syndromes (MDS) face considerable challenges in disease management and often require caregiver support. Reports on the burden of caring for patients with advanced cancer suggest that caregivers receive insufficient support. Our research aimed to identify key challenges for caregivers of patients with higher-risk MDS.
Key Summary Points
Why carry out this study?
There is significant impact and burden on caregivers of patients with higher-risk myelodysplastic syndromes (MDS).
This research aimed to identify key challenges for caregivers of patients with higher-risk MDS.
What was learned from the study?
Caregiver experience in higher-risk MDS is multifactorial.
Patients/caregivers perceive a lack of knowledge/expertise about MDS in healthcare professionals outside of MDS Centres of Excellence.
There is a high unmet need for mental health and emotional support for both patients and caregivers, which is not part of standard of care worldwide.