Article

Patient and Family Resources for Living With Myelodysplastic Syndromes

Sandra Kurtin

Phyllis Paterson

Sophie Wintrich

Tracey Iraca

Audrey Ann Hassan

Deborah Murray

Sue Hogan

Patient education, geriatric nursing, family caregivers
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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