The Perspectives of Adolescents and Young Adults on Adherence to Prophylaxis in Hemophilia: A Qualitative Study

References

• Suris JC, Michaud PA, Viner R. The adolescent with a chronic condition. Part I: developmental issues. Arch Dis Child. 2004;89(10):938–942. doi:10.1136/adc.2003.045369
   PubMed Web of Science ®Google Scholar
• Kynga H. Patient education: perspective of adolescents with a chronic disease. J Clin Nurs. 2003;2003:744–751. doi:10.1046/j.1365-2702.2003.00788.x
   Web of Science ®Google Scholar
• Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48:177–187. doi:10.1016/S0738-3991(02)00032-0
   PubMed Web of Science ®Google Scholar
• Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al. Guidelines for the management of hemophilia. Haemophilia. 2013;19(1):e1–e47. doi:10.1111/j.1365-2516.2012.02909.x
   PubMed Web of Science ®Google Scholar
• Schrijvers LH, Beijlevelt-van der Zande M, Peters M, Schuurmans MJ, Fischer K. Learning intravenous infusion in haemophilia: experience from the Netherlands. Haemophilia. 2012;18:516–520. doi:10.1111/j.1365-2516.2012.02752.x
   Web of Science ®Google Scholar
• Fischer K, Ljung R. Primary prophylaxis in haemophilia care: guideline update 2016. Blood Cells Mol Dis. 2017;67:81–85. doi:10.1016/j.bcmd.2017.02.004
   PubMed Web of Science ®Google Scholar
• Fischer K, Van Der Bom JG, Prejs R, et al. Discontinuation of prophylactic therapy in severe haemophilia: incidence and effects on outcome. Haemophilia. 2001;7:544–550. doi:10.1046/j.1365-2516.2001.00560.x
   Web of Science ®Google Scholar
• Witkop ML, McLaughlin JM, Anderson TL, Munn JE, Lambing A, Tortella B. Predictors of non-adherence to prescribed prophylactic clotting-factor treatment regimens among adolescent and young adults with a bleeding disorder. Haemophilia. 2016;22:e245–e250. doi:10.1111/hae.12951
   Web of Science ®Google Scholar
• Brand B, Dunn S, Kulkarni R. Challenges in the management of haemophilia on transition from adolescence to adulthood. Eur J Haematol. 2015;81:30–35. doi:10.1111/ejh.12582
   Web of Science ®Google Scholar
• Schrijvers LH, Beijlevelt-van der Zande M, Peters M, et al. Adherence to prophylaxis and bleeding outcome in haemophilia: a multicentre study. Br J Haematol. 2016;174:454–460. doi:10.1111/bjh.14072
   PubMed Web of Science ®Google Scholar
• Kyngäs HA, Kroll T, Duffy ME. Compliance in adolescents with chronic diseases: a review. J Adolesc Health. 2000;26(6):379–388. doi:10.1016/S1054-139X(99)00042-7
   PubMed Web of Science ®Google Scholar
• Krishnan S, Vietri J, Furlan R, Duncan N. Adherence to prophylaxis is associated with better outcomes in moderate and severe haemophilia: results of a patient survey. Haemophilia. 2015;21:64–70. doi:10.1111/hae.12533
   PubMed Web of Science ®Google Scholar
• Oladapo AO, Epstein JD, Williams E, Ito D, Gringeri A, Valentino LA. Health-related quality of life assessment in haemophilia patients on prophylaxis therapy: a systematic review of results from prospective clinical trials. Haemophilia. 2015;21(5):e344–e358. doi:10.1111/hae.12759
   Web of Science ®Google Scholar
• Schrijvers LH, Kars MC, Beijlevelt-van der Zande M, Peters M, Schuurmans MJ, Fischer K. Unravelling adherence to prophylaxis in haemophilia: a patients’ perspective. Haemophilia. 2015;21:612–621. doi:10.1111/hae.12660
   PubMed Web of Science ®Google Scholar
• Ruppel PS, Mey G. Grounded theory methodology—narrativity revisited. Integr Psychol Behav Sci. 2015;49(2):174–186. doi:10.1007/s12124-015-9301-y
   Web of Science ®Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi:10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. 2nd ed. Londen: SAGA publications; 2006.
   Google Scholar
• Schrijvers LH, Cnossen MH, Beijlevelt-van der Zande M, Peters M, Schuurmans MJ, Fischer K. Defining adherence to propylaxis in haemophilia. Haemophilia. 2016;22:e301–e348. doi:10.1111/hae.12935
   Web of Science ®Google Scholar
• Limperg P, Peters M, Gibbons E, et al. Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study. Haemophilia. 2016;22(4):e330–e333. doi:10.1111/hae.12961
   PubMed Web of Science ®Google Scholar
• Dierckx de Casterle B, Gastmans C, Bryon E, Denier Y. QUAGOL: a guide for qualitative data analysis. Int J Nurs Stud. 2012;49(3):360–371. doi:10.1016/j.ijnurstu.2011.09.012
   PubMed Web of Science ®Google Scholar
• Boeije H. Analysis in Qualitative Research. first ed. Thousand Oaks, Calafornia: SAGE Publications; 2010.
   Google Scholar
• Creswell JW. Qualitative Inquiry & Research Design - Choosing Among Five Approaches. 2nd ed. Thousand Oaks: Sage; 2007.
   Google Scholar
• Wynder EL. Inverstigator bias and interviewer bias: the problem of reporting systematic error in epdidemiology. J Clin Epidemiol. 1994;47(8):825–827. doi:10.1016/0895-4356(94)90184-8
   Web of Science ®Google Scholar
• Saunders B, Sim J, Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893–1907. doi:10.1007/s11135-017-0574-8
   PubMed Web of Science ®Google Scholar
• Van Staa A, Jedeloo S, van der Stege H. What we want ”: chronically ill adolescents’ preferences and priorities for improving health care. Patient Prefer Adherence. 2011;5:291–305. doi:10.2147/PPA.S17184
   PubMed Web of Science ®Google Scholar
• Schrijvers LH, Beijlevelt-van der Zande M, Peters M, et al. Achieving self-management of prophylactic treatment in adolescents: the case of haemophilia. Patient Educ Couns. 2016;99(7):1179–1183. doi:10.1016/j.pec.2016.01.016
   Web of Science ®Google Scholar
• Keough L, Sullivan-Bolyai S, Crawford S, Schilling L, Dixon J. Self-management of Type 1 diabetes across adolescence. Diabetes Educ. 2011;37(4):486–500. doi:10.1177/0145721711406140
   Web of Science ®Google Scholar
• Casey BJ, Jones RMJ, Hare TA. The adolescent brain. Ann N Y Acad Sci. 2008;126:111–126. doi:10.1196/annals.1440.010
   Web of Science ®Google Scholar
• Sawicki GS, Heller KS, Demars N, Robinson WM. Motivating adherence among adolescents with cystic fibrosis: youth and parent perspectives. Pediatr Pulmonol. 2015;50(2):127–136. doi:10.1002/ppul.23017
   PubMed Web of Science ®Google Scholar
• Bain-Brickley D, Butler L, Kennedy G, Rutherford G. Interventions to improve adherence to antiretroviral therapy in children with HIV infection (Review). Cochrane Libr. 2011;12:1–32. doi:10.1002/14651858.CD009513.www.cochranelibrary.com
   Google Scholar
• Kosse R, Kaptein A, Geers C, van Dijk L. mHealth intervention to support asthma self- management in adolescents: the ADAPT study. Patient Prefer Adherence. 2017;11:571–577. doi:10.2147/PPA.S124615
   Web of Science ®Google Scholar
• Qian W, Lam TT, Hon H, Lam W, Li C, Cheung YT. Telehealth interventions for improving self-management in patients with hemophilia: scoping review of clinical studies corresponding author. J Med Internet Res. 2019;21:1–15. doi:10.2196/12340
   Web of Science ®Google Scholar
• Schaefer MR, Kavookjian J. Patient education and counseling the impact of motivational interviewing on adherence and symptom severity in adolescents and young adults with chronic illness: a systematic review. Patient Educ Couns. 2017;100(12):2190–2199. doi:10.1016/j.pec.2017.05.037
   Web of Science ®Google Scholar
• Linn AJ, Vervloet M, Van Dijk L, Smit EG, Van Weert JCM. Effects of eHealth interventions on medication adherence: a systematic review of the literature corresponding author. J Med Internet Res. 2011;13:1–16. doi:10.2196/jmir.1738
   Web of Science ®Google Scholar
• Riekert KA, Borrelli B, Bilderback A, Rand CS. Patient education and counseling the development of a motivational interviewing intervention to promote medication adherence among inner-city, African-American adolescents with asthma. Patient Educ Couns. 2011;82(1):117–122. doi:10.1016/j.pec.2010.03.005
   PubMed Web of Science ®Google Scholar
• Khair K, Hons L, Gibson F, Ed C. Self-management and skills acquisition in boys with haemophilia. Heal Expect. 2013;18:1105–1113. doi:10.1111/hex.12083
   Web of Science ®Google Scholar