Mapping the Patient Experience in a Pediatric Hemophilia Unit: Our Patient Journey.

ABSTRACT: Background: Hemophilia is a rare X-linked bleeding disorder. Prophylaxis has improved outcomes, but there are still unmet needs to be addressed. The aim of this study was to develop a patient journey in pediatric patients with hemophilia, a visual tool that illustrates patients' relationship with the healthcare provider through time useful for identifying patient needs, potential concerns ("pain points"), and gaps in care. Methods: qualitative study in a pediatric hemophilia unit using a human-centered design methodology. First stage: discover and empathize: (a) semi-structured interviews to patients/families and stakeholders; (b) observation techniques ("shadowing") to patients/families and professionals. Second stage: analyzing the collected information to create the patien

SUBMITTER: Berrueco R 

PROVIDER: S-EPMC11508278 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature