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Patient and Family Resources for Living With Myelodysplastic Syndromes

Sandra E. Kurtin
Phyllis Paterson
Sophie Wintrich
Tracey Iraca
Audrey Ann Hassan
Deborah Murray
Sue Hogan
CJON 2012, 16(3), 58-64 DOI: 10.1188/12.CJON.S1.58-64

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. This article discusses these challenges and provides a number of resources designed to help educate healthcare professionals, patients, and caregivers.


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