Exploring the experiences of young children with severe hemophilia and their caregivers.

 

Background and objective: To delivery the best possible healthcare experience for patients, it is essential to gain insight into the patient experience with the care provided and their disease in general. How do young children with severe hemophilia and their caregivers experience their health journey?

Methods: Semi-structured interviews with young hemophilia patients treated prophylactically and their caregivers. Patients and caregivers were asked to fill in a sensitizing booklet. Participating hemophilia treatment centers (HTCs) are Erasmus MC – Sophia Children’s Hospital & Amsterdam UMC – Emma Children’s Hospital. Patients and caregivers were asked about their experiences with 1) the process leading up to diagnosis, 2) care provided at the hemophilia treatment center, 3) treatment process, and 4) dealing with hemophilia in their daily lives. Experiences were analyzed and visualized in a patient journey (will be).

(Preliminary) Results: Seven families of young hemophilia patients aged between 1,5 and 11 years old were interviewed. 3 patients with hemophilia A and 4 patients with hemophilia B. Areas of improvement include 1) lack of knowledge by helahtcare professionals not working at a HTC, 2) information provision by the hemophilia treatment center, 3) inclusion of patient's opinion during shared decision making, and 4) perceived lack of control and fear for bleeding episode.

Conclusion: Parents and patient are primarily positive about their regular consults at the HTC. The negative experiences were primarily related to the diagnosis process, emergency room visits and daily life. The negative experiences and subsequent identified areas of improvement can be used to improve patient experiences and hemophilia care in general.