Mapping the Patient Experience in a Pediatric Hemophilia Unit: Our Patient Journey
Por:
Berrueco R, Nuria Caballero Mencía, López-Tierling M, Benedicto C, Cristina González-Anleo López, Rodríguez-Nieva N, David Nadal Miquel, Vinyets J and Jabalera M
Publicada:
1 oct 2024
Ahead of Print:
18 oct 2024
Resumen:
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.
Filiaciones:
Berrueco R:
Pediatric Hematology Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
Institut de Recerca Sant Joan de Déu de Barcelona (IRSJD), Santa Rosa 39-57, 08950 Esplugues de Llobregat, Spain
National Institute of Biomedical Investigation in Rare Disorders (CIBER ER), Instituto de Salud Carlos III, 28029 Madrid, Spain
Nuria Caballero Mencía:
Pediatric Hematology Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
López-Tierling M:
Quality and Patient Experience Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
Benedicto C:
Pediatric Hematology Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
Cristina González-Anleo López:
Pharmacy Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
Rodríguez-Nieva N:
Pediatric Rehabilitation Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
David Nadal Miquel:
Quality and Patient Experience Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
:
Quality and Patient Experience Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
Jabalera M:
Quality and Patient Experience Department, Hospital Sant Joan de Déu, Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Spain
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