Patient and Family Resources for Living With Myelodysplastic Syndromes

Abstract

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.

Optimizing Outcomes with Azacitidine: Recommendations from Canadian Centres of Excellence

“…In addition to the involvement of a diverse group of health care professionals (including family practitioners, hematologists, oncologists, and nurses), family and friends often play an active role in building a support system for patients. Open communication between these parties about the treatment process will empower patients to participate in the decision-making process for their care 29 .…”

Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers

“…However there could be an improvement in information provision over time, as only 34% of patients from a 2009 French survey felt that the information dispensed at the time of disclosure had been absolutely adequate [7]. This could be a positive effect of the efforts made over the years to improve information particularly through the use of leaflets [18].…”

“…A large pool of questions was chosen from previous available QPLs (Table 1) and supplemented based on the available literature on MDS patients' information needs [7,8] and available patients' leaflets [18]. A final pool of 53 questions (Table 2), adapted to the specific MDS context in both Australia and France, was chosen.…”

Myelodysplastic Syndromes

“…Shah et al (2012) also provide a review of the physiology of transfusion-related iron overload, strategies for identifying and monitoring at-risk patients, and guidelines for the safe administration of iron chelation therapies. In the fifth and final article, Kurtin, Paterson, et al (2012) summarize the currently available international resources for patients with MDS and their caregivers, including discussion of the most commonly asked questions and how a nurse might provide information to address these inquiries. Data specific to quality of life in patients with MDS are relatively recent.…”