Adherence to prophylaxis in adolescents and young adults with severe haemophilia: a qualitative study with healthcare professionals

References

• Alvin, P., Rey, C., & Frappier, J. Y. (1995). Compliance thérapeutique chez l’adolescent malade chronique. Archives de Pédiatrie, 2(9), 874–882. doi:10.1016/0929-693X(96)81267-X.
   PubMedGoogle Scholar
• Arias Llorente, R. P., Bousoño García, C., & Díaz Martín, J. J. (2008). Treatment compliance in children and adults with cystic fibrosis. Journal of Cystic Fibrosis, 7(5), 359–367. doi:10.1016/j.jcf.2008.01.003.
   PubMed Web of Science ®Google Scholar
• Breakey, V. R., Blanchette, V. S., & Bolton-Maggs, P. H. B. (2010). Towards comprehensive care in transition for young people with haemophilia. Haemophilia, 16(6), 848–857. doi:10.1111/j.1365-2516.2010.02249.x.
   PubMed Web of Science ®Google Scholar
• Brocki, J. M., & Wearden, A. J. (2006). A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychology and Health, 21(1), 87–108. doi: 10.1080/14768320500230185
   Web of Science ®Google Scholar
• Collins, P. W. (2012). Personalized prophylaxis. Haemophilia, 18(4), 131–135. doi:10.1111/j.1365-2516.2012.02838.x.
   PubMedGoogle Scholar
• Collins, P. W., Blanchette, V. S., Fischer, K., BjÖRkman, S., Oh, M., & Fritsch, S.., … On Behalf of The rahf-Pfm Study Group (2009). Break-through bleeding in relation to predicted factor VIII levels in patients receiving prophylactic treatment for severe hemophilia A. Journal of Thrombosis and Haemostasis, 7(3), 413–420. doi:10.1111/j.1538-7836.2008.03270.x.
   PubMed Web of Science ®Google Scholar
• Collins, K., & Nicolson, P. (2002). The meaning of ‘satisfaction’ for people with dermatological problems: Reassessing approaches to qualitative health psychology research. Journal of Health Psychology, 7(5), 615–629. doi: 10.1177/1359105302007005681
   PubMed Web of Science ®Google Scholar
• De Moerloose, P., Urbancik, W., van den Berg, H. M., & Richards, M. (2008). A survey of adherence to haemophilia therapy in six European countries: Results and recommendations. Haemophilia, 14(5), 931–938. doi:10.1111/j.1365-2516.2008.01843.x.
   PubMed Web of Science ®Google Scholar
• DiMatteo, M. R., Sherbourne, C. D., Hays, R. D., Ordway, L., Kravitz, R. L., McGlynn, E. A., … Rogers, W. H. (1993). Physicians’ characteristics influence patients’ adherence to medical treatment: Results from the Medical Outcomes Study. Health Psychology, 12(2), 93–102. doi:10.1037/0278-6133.12.2.93.
   PubMed Web of Science ®Google Scholar
• Duncan, N., Kronenberger, W., Roberson, C., & Shapiro, A. (2010). VERITAS-Pro: A new measure of adherence to prophylactic regimens in haemophilia. Haemophilia, 16(2), 247–255. doi:10.1111/j.1365-2516.2009.02129.x.
   PubMed Web of Science ®Google Scholar
• du Treil, S., Rice, J., & Leissinger, C. A. (2007). Quantifying adherence to treatment and its relationship to quality of life in a well-characterized haemophilia population. Haemophilia, 13(5), 493–501. doi:10.1111/j.1365-2516.2007.01526.x.
   PubMed Web of Science ®Google Scholar
• Fischer, K. (2012). Prophylaxis for adults with haemophilia: One size does not fit all. Blood Transfusion, 10(2), 169–173. doi:10.2450/2012.0174-11.
   PubMed Web of Science ®Google Scholar
• Hacker, M., Geraghty, S., & Manco-Johnson, M. (2001). Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia, 7(4), 392–396.
   PubMed Web of Science ®Google Scholar
• Iannotti, R. J., Schneider, S., Nansel, T. R., Haynie, D. L., Plotnick, L. P., Clark, L. M., … Simons-Morton, B. (2006). Self-efficacy, outcome expectations, and diabetes self-management in adolescents with type 1 diabetes. Journal of Developmental and Behavioral Pediatrics, 27(2), 98–105. doi:10.1097/00004703-200604000-00003.
   PubMed Web of Science ®Google Scholar
• Khair, K. (2013). Supporting adherence and improving quality of life in haemophilia care. British Journal of Nursing, 22(12), 692. doi: 10.12968/bjon.2013.22.12.692
   PubMedGoogle Scholar
• La Greca, A. M., Auslander, W. F., Greco, P., Spetter, D., FisherJrE. B., & Santiago, J. V. (1995). I get by with a little help from my family and friends: Adolescents’ support for diabetes care. Journal of Pediatric Psychology, 20(4), 449–476. doi:10.1093/jpepsy/20.4.449.
   PubMed Web of Science ®Google Scholar
• La Greca, A. M., & Bearman, K. J. (2002). The Diabetes Social Support Questionnaire-family version: Evaluating adolescents’ diabetes-specific support from family members. Journal of Pediatric Psychology, 27(8), 665–676. doi:10.1093/jpepsy/27.8.665.
   PubMed Web of Science ®Google Scholar
• Ljung, R. (2009). Prophylactic therapy in haemophilia. Blood Reviews, 23(6), 267–274. doi:10.1016/j.blre.2009.08.001.
   PubMed Web of Science ®Google Scholar
• Llewellyn, C. D., Miners, A. H., Lee, C. A., Harrington, C., & Weinman, J. (2003). The illness perceptions and treatment beliefs of individuals with severe haemophilia and their role in adherence to home treatment. Psychology & Health, 18(2), 185–200. doi:10.1080/0887044031000098198.
   Web of Science ®Google Scholar
• Makris, M. (2012). Prophylaxis in haemophilia should be life-long. Blood Transfusion, 10(2), 165–168. doi:10.2450/2012.0147-11.
   PubMed Web of Science ®Google Scholar
• Manco-Johnson, M. J., Abshire, T. C., Shapiro, A. D., Riske, B., Hacker, M. R., Kilcoyne, R., … Evatt, B. (2007). Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. New England Journal of Medicine, 357(6), 535–544. doi:10.1056/NEJMoa067659.
   PubMed Web of Science ®Google Scholar
• Reid, K., Flowers, P., & Larkin, M. (2005). Interpretative phenomenological analysis: An overview and methodological review. The Psychologist, 18(1), 20–23.
   Web of Science ®Google Scholar
• Richards, M., Williams, M., Chalmers, E., Liesner, R., Collins, P., Vidler, V., & Paediatric Working Party of the United Kingdom Haemophilia Doctors Organisation. (2010). A United Kingdom Haemophilia Centre Doctors’ Organization guideline approved by the British Committee for standards in Haematology: Guideline on the use of prophylactic factor VIII concentrate in children and adults with severe haemophilia A. British Journal of Haematology, 149(4), 498–507. doi:10.1111/j.1365-2141.2010.08139.x.
   PubMed Web of Science ®Google Scholar
• Salema, N., Elliott, R., & Glazebrook, C. (2011). A systematic review of adherence-enhancing interventions in adolescents taking long-term medicines. Journal of Adolescent Health, 49(5), 455–466. doi:10.1016/j.jadohealth.2011.02.010.
   PubMed Web of Science ®Google Scholar
• Schrijvers, L. H., Schuurmans, M. J., & Fischer, K. (2016). Promoting self-management and adherence during prophylaxis: Evidence-based recommendations for haemophilia professionals. Haemophilia, 22(4), 499–506. doi:10.1111/hae.12904.
   PubMed Web of Science ®Google Scholar
• Shaw, R. J. (2001). Treatment adherence in adolescents: Development and psychopathology. Clinical Child Psychology and Psychiatry, 6(1), 137–150. doi:10.1177/1359104501006001011.
   Google Scholar
• Smith, J. A. (2003). Qualitative psychology: A practical guide to research methods. London: SAGE.
   Google Scholar
• Smith, J. A. (2010). Interpretative phenomenological analysis. Existential Analysis: Journal of the Society for Existential Analysis, 21, 2.
   Google Scholar
• Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. Los Angeles, CA: SAGE.
   Google Scholar
• Smith, J. A., & Osborn, M. (2003). Interpretative phenomenological analysis. Qualitative psychology: A practical guide to methods. London: Sage.
   Google Scholar
• Smith, J. A., & Osborn, M. (2008). Interpretative phenomenological analysis. In J. A. S (Ed.), Qualitative psychology: A practical guide to research methods (pp. 53–80). London: SAGE Publications Ltd.
   Google Scholar
• Street, R. L., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counseling, 74(3), 295–301. doi:10.1016/j.pec.2008.11.015.
   PubMed Web of Science ®Google Scholar
• Thornburg, C. D. (2008). Physicians’ perceptions of adherence to prophylactic clotting factor infusions. Haemophilia, 14(1), 25–29. doi:10.1111/j.1365-2516.2007.01591.x.
   PubMed Web of Science ®Google Scholar
• van Os, S., Troop, N., Ryder, N., & Hart, D. P. (2018). Adherence to prophylaxis in adolescents and young adults with severe haemophilia A, a qualitative study with patients. Health Psychology and Behavioral Medicine, 6(1), 277–300. doi:10.1080/21642850.2018.1493384.
   Web of Science ®Google Scholar
• van Os, S., Troop, N., Sullivan, K., & Hart, D. (2017). Adherence to prophylaxis in adolescents and young adults with severe haemophilia: A quantitative study with patients. PLOS ONE, 12(1), e0169880. doi:10.1371/journal.pone.0169880.
   PubMed Web of Science ®Google Scholar
• Witmer, C., Presley, R., Kulkarni, R., Michael, S. J., Manno, C. S., & Raffini, L. (2011). Associations between intracranial haemorrhage and prescribed prophylaxis in a large cohort of haemophilia patients in the United States. British Journal of Haematology, 152(2), 211–216. doi:10.1111/j.1365-2141.2010.08469.x.
   PubMed Web of Science ®Google Scholar
• Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health, 15(2), 215–228. doi:10.1080/08870440008400302.
   Web of Science ®Google Scholar
• Yardley, L. (2008). Demonstrating validity in qualitative psychology. In J. A. Smith (Ed.), Qualitative psychology (2 ed., pp. 235–251). London: Sage.
   Google Scholar