A Patient-Centered Programmatic Approach for Higher-Risk Myelodysplastic Syndromes (HR-MDS) in the US Community Oncology Setting
Authors: Rossetti James M. , Choksi Rushir , Vasudevan Anupama , Blanc Simon , Brenneman Dawn , Wang Brandon , McMahon Peter , Beal Jason , Jhaveri Teraneh Z. , Williamson Mellissa , Hogea Cosmina 
Published: December 2023

Introduction: Prompt diagnosis and treatment are critical for patients with higher-risk myelodysplastic syndromes (HR-MDS) given the high likelihood of progression to leukemia and adverse clinical outcomes. However, pre-diagnosis dynamics can contribute to delays in diagnosis, genetic testing, and treatment initiation, especially among patients receiving care in the community oncology setting. A patient-centered program has been designed and is proposed to be executed in 4 phases: understanding adherence to guideline-concordant care for HR-MDS patients; gaining perspectives to contextualize the patient experience; and implementing a program that can monitor the process for improving patient outcomes (Figure 1). The objectives of this study are to evaluate and address the gaps and disparities of care in the diagnostic and treatment journey of patients with HR-MDS treated in a community oncology setting in order to provide an evidence-based understanding of the patient characteristics and journey to testing, diagnosis, and treatment (Phase 1 of the program).
Methods: This is a retrospective chart review including patients treated in the community oncology network and identified in the Integra PrecisionQ deidentified database. Patients were identified as diagnosed with HR-MDS between January 1, 2014 and June 30, 2022, using a combination of ICD codes and receipt of hypomethylating agents in line with National Comprehensive Cancer Network guidelines as their first treatment. Eligible patients had at least 3 months of follow-up and at least 6 months of look-back prior to HR-MDS diagnosis. Signs and symptoms such as fatigue, weight loss, bruise, chills, night sweats, anemia, thrombocytopenia, and neutropenia that initiated the HR-MDS diagnosis journey were collected by manual curation.
Results: A total of 350 patients aged 18 years or older diagnosed with HR-MDS over the study period were selected. The majority of patients included in this sample were White (82.6%) and male (59.4%) (Table 1). More than 50% of the 350 patients were ≥75 years old at diagnosis and most of them (91%) were diagnosed by a hematologist/oncologist in an outpatient setting. The median time from first sign/symptom to bone marrow biopsy and treatment initiation were 19.3 months (interquartile range [IQR] 8.9, 44.3) and 22 months (IQR 11.4, 45.8), respectively. Of the 350 patients included in the study, 342 (97.7%) had at least 1 sign or symptom leading to HR-MDS diagnosis, with the majority of patients presenting with anemia (77.2%), followed by thrombocytopenia (66.4%), fatigue (64.3%), and neutropenia (43.3%). International Prognostic Scoring System (IPSS) scores were not documented for nearly half (43.7%) of the patients included in this chart review.
Conclusions: This initial analysis highlights several challenges in the HR-MDS patient care journey, including long time intervals elapsed between first sign/symptom and bone marrow biopsy, leading to further treatment, accompanied by a relatively high absence of IPSS score documentation. These findings suggest several potential opportunities to optimize patient care, such as shortening the time from symptoms to diagnosis and time from diagnosis to treatment, utilization and documentation of IPSS score, and prompt treatment initiation. Ultimately, this program aims to utilize this Phase 1 data to identify the gaps in care and to formulate quality measures to optimize care and facilitate timely diagnosis and appropriate treatment initiation among HR-MDS patients.