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

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 patient journey. Results: A preliminary "clinical journey" was built using information from eight interviews with professionals from the interdisciplinary hemophilia team. Interviews with patient association representatives, 13 patients/families, and six "shadowing" techniques with patients and professionals were used to compare the "clinical journey" with the patient's reported experience. Main "pain points" were detected before diagnosis, at diagnosis, during assimilation, at treatment initiation, during training, and when patients start asking about their condition. The empowerment process was detected as a potential moment to improve patient/family experiences. Conclusions: The patient journey helps to better understand patient/family experiences related to the disease in different scenarios. Caregivers and patient learning and empowerment processes are significant moments where the interdisciplinary team should focus to offer valuable solutions to improve outcomes. Further research is required in this area, particularly empirical research to amend or confirm the suggested patient journey.