Design, implementation and evaluation of a model of care for patients with germline predisposition to haematological malignancy and bone marrow failure syndromes.

ABSTRACT:

Background

The bone marrow failure syndromes (BMFS) are clinically heterogeneous conditions with both inherited and acquired etiologies. Optimal care is often challenged by the complexity of these disorders and gaps in healthcare delivery. The Evaluating Multidisciplinary Bone maRrow fAilure CarE (EMBRACE) study is a multi-stage hybrid implementation-effectiveness study designed to explore the nature of issues faced by patients with BMFS and their physicians, and to develop, implement, and evaluate a comprehensive model of care.

Methods

To identify barriers to optimal BMFS care, we conducted semi-structured interviews with patients and patient advocates, followed by a nationwide survey of physicians involved in BMFS management. Thematic analysis was performed on interview da

SUBMITTER: Fox LC 

PROVIDER: S-EPMC12347311 | biostudies-literature | 2025 Aug

REPOSITORIES: biostudies-literature