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Research Article: Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK

Date Published: 2023-12-07

Abstract:
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.

Introduction:
Myelodysplastic syndromes (MDS) are a heterogeneous group of haematopoietic diseases associated with impaired bone marrow function, persistent cytopenia and a risk of progression to acute myeloid leukaemia (AML) [1]. Higher-risk patients are those classified as International Prognostic Scoring System (IPSS) INT-2 or high; Revised IPSS (IPSS-R) intermediate (>?3.5 points), high or very high; or World Health Organization classification-based Prognostic Scoring System high or very high. Patients with IPSS-R…

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