https://orcid.org/0000-0003-1437-4276
Abstract
Background
New therapies provide a favorable evolution in the care management of persons with hemophilia. However, the impact of these new therapies on patient care organization remains to be determined. A qualitative study will be implemented to analyze patients’ perception regarding the impact of innovation on the organization of their care management. Secondary objectives will include refining specific factors related to persons with hemophilia (barriers or facilitators, especially the place of treatment) to consider within an organizational impact analysis.
Patients and Methods
Semi-structured individual interviews will be conducted via videoconferencing or by phone by two researchers using an interview guide. Participants will be recruited from the Rhône-Alpes region, in France. Physicians from two hemophilia treatment centers will identify eligible patients. Moreover, a call for volunteers will be launched by the Rhône-Alpes committee of the French hemophilia association. Interviews will be conducted with adult patients, adolescent patients or parents of a minor with hemophilia regularly treated prophylactically or on demand. Data analysis will be performed with NVivo® software. Each interview will be analyzed by two researchers using an inductive content analytic method.
Discussion
The INNOVHEMO study is an original study analyzing the way patients perceive the impact of an innovation on their care management organization. The resulting patient-specific factors, identified as barriers or facilitators, will need to be integrated into a more comprehensive analysis of the impact of innovation on care management organization.
Abbreviations
CFCs, clotting factor concentrates; CRC-MHC, constitutional hemorrhagic diseases resource and competencies center; CRH, reference center on hemophilia and other constitutional hemorrhagic diseases; CTH, center for hemophilia care; HIV, human immunodeficiency virus; PWH, persons with hemophilia.
Acknowledgments
We acknowledge the Rhône-Alpes committee of the French Hemophilia Association for the support of our work. We would like to thank Mrs Bénédicte Clément for her help in manuscript preparation.
Disclosure
Mr Benjamin du Sartz de Vigneulles reports being an employee until march 2019, Oncology Department for Pierre Fabre Laboratories. The authors report no other conflicts or competing interests in this work.