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

Introduction: 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.

Multi-national survey of transfusion experiences and preferences of patients with myelodysplastic syndrome.

Background: Transfusion dependence on red blood cells (RBCs) is common for patients with myelodysplastic syndromes (MDS) but transfusion practice and experience for outpatients with MDS are largely unknown.

Methods: We conducted a web-based cross-sectional multi-national survey to audit real-world transfusion practices and understand the experiences and preferences of patients with MDS requiring RBC transfusion. The survey comprised 57 questions and was distributed to patients in the United States of America, Canada, and the United Kingdom.

Beyond maximum grade: modernising the assessment and reporting of adverse events in haematological malignancies.

Tremendous progress in treatment and outcomes has been achieved across the whole range of haematological malignancies in the past two decades. Although cure rates for aggressive malignancies have increased, nowhere has progress been more impactful than in the management of typically incurable forms of haematological cancer. Population-based data have shown that 5-year survival for patients with chronic myelogenous and chronic lymphocytic leukaemia, indolent B-cell lymphomas, and multiple myeloma has improved markedly.

Patient and family resources for living with myelodysplastic syndromes.

Primarily a disease affecting older adults, myelodysplastic syndromes (MDS) are a class of incurable myeloid malignancies with variable clinical presentation, treatment recommendations, and prognoses. Although effective communication between healthcare professionals and patients and their caregivers is a significant part of optimizing clinical outcomes, studies have shown that all three frequently have an incomplete understanding of MDS, its therapeutic options, and the fact that MDS is a malignancy. In addition, the advanced age of the patient population, high frequency of comorbidities, and variability of disease outcomes based on risk status require consistent communication across a wide number and type of healthcare providers as well as an individualized approach to patient and caregiver education.