Background: Higher-risk myelodysplastic syndromes (HR-MDS) may be difficult to diagnose because patients present with nonspecific signs and symptoms. This can prolong diagnosis, even though disease progression can occur quickly in HR-MDS.
Objectives: This study identified places along the care journey where there are gaps in care in the identification, testing, diagnosis, and treatment of insured US patients with HR-MDS.
Methods: This retrospective study utilized nationally representative US administrative claims and linked socioeconomic and social determinants of health (SDoH) data to characterize newly diagnosed patients with HR-MDS between 1 January 2017 and 30 April 2022.
Results: The study included 1710 patients, of which a large proportion experienced some level of unmet need for modifiable SDoH characteristics. The median time between first sign or symptom and HR-MDS diagnosis was nearly the full look-back period of 12 months. Fewer than half of the patients received guideline-recommended treatment. Few patients had clinical trial participation.
Conclusions: Opportunities to improve care include designing programs that support SDoH needs of patients (such as transportation access or social isolation), shortening the time between initial signs or symptoms and diagnosis and improving access to clinical trial participation.
© 2025. The Author(s).