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. This article discusses these challenges and provides a number of resources designed to help educate healthcare professionals, patients, and caregivers.
University of Arizona Cancer Center, University of Tucson, Arizona, USA. sandra.kurtin@uahealth.com
Sandra E
SE
Kurtin
Phyllis
P
Paterson
Sophie
S
Wintrich
Tracey
T
Iraca
Audrey Ann
AA
Hassan
Deborah
D
Murray
Sue
S
Hogan
D003142:Communication; D006266:Health Education; D007722:Health Knowledge, Attitudes, Practice; D006295:Health Resources / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D009190:Myelodysplastic Syndromes / Q000451:nursing*; D010353:Patient Education as Topic / Q000379:methods*; D011368:Professional-Family Relations; D012657:Self-Help Groups; D012944:Social Support; D012955:Societies, Medical; D014481:United States