Adherence to prophylaxis and quality of life in children and adolescents with severe haemophilia A

Summary Treatment adherence in adolescents with chronic diseases is around 50%, and failure is more common in preventive therapy. In haemophilia, contradictory results are reported by the published studies. The objective of this study was to evaluate adherence with factor VIII (FVIII) prophylaxis in...

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Bibliographic Details
Published in:Haemophilia : the official journal of the World Federation of Hemophilia 2015-07, Vol.21 (4), p.458-464
Main Authors: García-Dasí, M., Aznar, J. A., Jiménez-Yuste, V., Altisent, C., Bonanad, S., Mingot, E., Lucía, F., Giménez, F., López, M. Fernanda, Marco, P., Pérez, R., Fernández, M. Á., Paloma, M. J., Galmes, B., Herrero, S., García-Talavera, J. A.
Format: Article
Language:English
Subjects:
adherence
Adolescent
adolescents
Child
children
Cross-Sectional Studies
Factor VIII - therapeutic use
haemophilia
Hemophilia A - drug therapy
Hemophilia A - pathology
Hemophilia A - psychology
Humans
Male
Parents - psychology
Patient Compliance
prophylaxis
Quality of Life
Severity of Illness Index
Surveys and Questionnaires
Young Adult
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Summary:Summary Treatment adherence in adolescents with chronic diseases is around 50%, and failure is more common in preventive therapy. In haemophilia, contradictory results are reported by the published studies. The objective of this study was to evaluate adherence with factor VIII (FVIII) prophylaxis in Spanish patients with severe haemophilia A between age 6 and 20 years. Data were collected retrosp‐ectively in the previous 2 years. The primary endpoint was the absolute adherence index (AAI), and the endpoints were related to clinical status, age, prophylaxis regimen, responsibility for factor administration and quality of life (QoL), assessed by the Haemo‐QoL questionnaires. A total of 78 patients from 14 Spanish hospitals were recruited. Adherence ranged between −64.4 and 66.7 (mean −3.08). No differences were observed between children and adolescents (7.11 vs. 6.39; P = 0.809). A statistically significant association (P 
ISSN:1351-8216
1365-2516
DOI:10.1111/hae.12618