Abstract
Background: MDS represent a heterogeneous group of myeloid malignancies with variable prognosis. MDS are underdiagnosed, and many lower-risk patients are offered only supportive care (Khan AM. Am J Med. 2012;125[7 suppl]:S15-S7). This study aimed to describe current treatment management of lower-risk MDS in the community setting and identify educational gaps among oncology professionals, including hematologists/oncologists, advanced practitioners (APs), and registered nurses (RNs). Methods: In 2014, three facilitated interdisciplinary meetings about the management of lower-risk MDS, including discussion concerning treatment of patients with lenalidomide, were held in Boston, Chicago, and San Francisco. Attendees included 16 hematologists/oncologists, 14 nurse practitioners, 2 physician’s assistants, and 7 RNs, from 14 US states, all with clinical experience managing patients with lower-risk MDS. Results presented exclude RNs. Results: Compared with hematologists/oncologists, most APs had < 10 years’ experience managing patients with lower-risk MDS (20% vs 75%, respectively). The key points regarding lenalidomide treatment that APs most often discussed with their lower-risk del(5q) MDS patients were adverse events (AEs; 88%), time to response (88%), and duration of treatment (75%). Most APs (56%) noted that patients with concerns about lenalidomide treatment contacted a nurse as their primary point of contact; 29% noted that their practice has a dedicated triage nurse, with APs or physicians being consulted if necessary. 37% of APs and 53% of hematologists/oncologists felt there were MDS topics that they or their colleagues required more information about. APs wanted more information about expectation and management of cytopenias, when to initiate treatment, time to response, new treatments, and implications of cytogenetic abnormalities. Hematologists/oncologists were interested in more information on prognostic scoring systems, lenalidomide for treating high-risk MDS, novel therapeutics, genetic mutations, and optimal sequencing of therapeutic agents. 81% of APs and 73% of hematologists/oncologists felt patients with lower-risk MDS needed more education about their disease. Topics mentioned by APs included AEs (38%), time to response (31%), compliance (25%), and MDS as a cancer (13%). Topics mentioned by hematologists/oncologists included treatment options and outcomes (20%), MDS as a cancer (20%), treatment of fatigue (7%), transfusion management (7%), and differences between management of higher- and lower-risk MDS (7%). Conclusions: These interdisciplinary meetings discussed the management of lower-risk MDS and identified gaps in HCP knowledge. There were certain topics about which HCPs, and their patients, required or requested additional information. These knowledge gaps may inform future educational and training sessions to ensure optimal treatment and patient management in lower-risk MDS.
