Objective: Adolescents with a chronic disorder, such as haemophilia, need to attain responsibility for their disease. The aim was to gain insight into how adolescents achieve self-management of prophylactic treatment. Methods: In three Dutch Haemophilia Treatment Centres, adolescents (10-25 years) received structured questions on treatment responsibility and self-management (pre-specified definitions) during routine nursing consultation. Results: In total, 155 interviews were performed in 100 patients (median age 14.4 years). Self-infusion was initiated at a median age of 12.3 years (IQR 11.5-13.0) and self-management was achieved 9.6 years later, at a median age of 22.6 years. This process included three phases coinciding with known stages of adolescence. In early adolescence, patients acquired the technique of self-infusion (12.3 years) leading to independent self-infusion in middle adolescence (17.2 years). In late adolescence, patients demonstrated an increase in more complex skills, such as bleeding management and communication with the haemophilia physician (19.9-22.6 years). Conclusion: Although, the first steps in self-management with regard to self-infusion are taken in early adolescence, complete self-management was achieved in late adolescence after almost 10 years. Practice implications: Insight in this transitional process helps to provide individualized support and emphasizes the need for continued education with regard to self-management skills.

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doi.org/10.1016/j.pec.2016.01.016, hdl.handle.net/1765/83869
Patient Education and Counseling
Department of Pediatrics

Schrijvers, L. H., Beijlevelt - van der Zande, M., Peters, M., Lock, J., Cnossen, M., Schuurmans, M., & Fischer, K. (2016). Achieving self-management of prophylactic treatment in adolescents: The case of haemophilia. Patient Education and Counseling, 99(7), 1179–1183. doi:10.1016/j.pec.2016.01.016