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ORIGINAL RESEARCH

Pediatric-Adult Care Transition: Perceptions of Adolescent and Young Adult Patients with Sickle Cell Disease and Their Healthcare Providers

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Pages 2727-2737 | Received 13 Jun 2022, Accepted 02 Sep 2022, Published online: 01 Oct 2022

References

  • Rees DC, Williams TN, Gladwin MT. Sickle-cell disease. Lancet. 2010;376:2018–2031. doi:10.1016/S0140-6736(10)61029-X
  • Quinn CT, Rogers ZR, McCavit TL, et al. Improved survival of children and adolescents with sickle cell disease. Blood. 2010;115:3447–3452. doi:10.1182/blood-2009-07-233700
  • Atkin K, Ahmad WI. Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder. Soc Sci Med. 2001;53:615–626.
  • Sabaté E. Adherence to long-term therapies: evidence for action. Geneva: World Health Organization; 2003. Available from: http://www.who.int/chp/knowledge/publications/adherence_report/en/. Accessed June 20, 2016.
  • Berens JC, Jan S, Szalda D, et al. Young adults with chronic illness: how can we improve transitions to adult care? Pediatrics. 2017;139:pii: e20170410.
  • Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute care utilization and rehospitalizations for sickle cell disease. JAMA. 2010;303:1288–1294. doi:10.1001/jama.2010.378
  • Candrilli SD, O’Brien SH, Ware RE, et al. Hydroxyurea adherence and associated outcomes among Medicaid enrollees with sickle cell disease. Am J Hematol. 2011;86:273–277. doi:10.1002/ajh.21968
  • Yang YM, Shah AK, Watson M, et al. Comparison of costs to the health sector for comprehensive and episodic health care for sickle cell disease patients. Public Health Rep. 1995;110:80–86.
  • Porter JS, Wesley KM, Zhao MS, et al. Pediatric to adult care transition: perspectives of young adults with sickle cell disease. J Pediatr Psychol. 2017;2:1016–1027. doi:10.1093/jpepsy/jsx088
  • Kulandaivelu Y, Laloo C, Ward R, et al. Exploring the needs of adolescents with sickle cell disease to inform a digital self-management and transitional care program: qualitative study. JMIR Pediatr Parent. 2018;25:e11058. doi:10.2196/11058
  • Renedo A, Miles S, Subarna Chakravorty S, et al. Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services - evidence from ‘This Sickle Cell Life’ research. BMC Health Serv Res. 2019;19:876. doi:10.1186/s12913-019-4726-5
  • Stollon NB, Paine CW, Lucas MS, et al. Transitioning adolescents and young adults with sickle cell disease from pediatric to adult health care: provider perspectives. J Pediatr Hematol Oncol. 2015;37:577–583. doi:10.1097/MPH.0000000000000427
  • De Montalembert M, Guitton C. Transition from paediatric to adult care for patients with sickle cell disease. Br J Haematol. 2014;164:630–635.
  • Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs. 2008;62:107–115. doi:10.1111/j.1365-2648.2007.04569.x
  • Hsieh HF, Shannon SE. Three approaches to qualitative content analysis qualitative. Health Res. 2005;15:1277–1288. doi:10.1177/1049732305276687
  • Thomas DR, General Inductive A. Approach for analyzing qualitative evaluation data. Am J Eval. 2006;27:237–246.
  • Blanchet A, Gotman A. L’entretien. [The Interview]. 2nd ed. Paris: Armand Colin; 2007. French.
  • Kaufmann JC. L’entretien Compréhensif. [The Comprehensive Interview]. 4th ed. Paris: Armand Colin; 1996. French.
  • 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;19:349–357.
  • Smith WR, Sisler IY, Johnson S, et al. Lessons learned from building a pediatric-to-adult Sickle Cell transition program. South Med J. 2019;112(3):190–197. doi:10.14423/SMJ.0000000000000950
  • Morsa M, Lombrail P, Boudailliez B, et al. A qualitative study on the educational needs of young people with chronic conditions transitioning from pediatric to adult care. Patient Prefer Adherence. 2018;12:2649–2660. doi:10.2147/PPA.S184991
  • Crosby LE, Modi AC, Lemanek KL, Guilfoyle SM, Kalinyak KA, Mitchell MJ. Perceived barriers to clinic appointments for adolescents with sickle cell disease. J Pediatr Hematol Oncol. 2009;31:571–576. doi:10.1097/MPH.0b013e3181acd889
  • Stevenson FA, Cox K, Britten N, Dundar Y. A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance. Health Expect. 2004;7(3):235–245. doi:10.1111/j.1369-7625.2004.00281.x
  • Cooley WC, Sagerman PJ; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128:182–200.
  • Calhoun CL, Abel RA, Pham HA, et al. Implementation of an educational intervention to optimize self-management and transition readiness in young adults with Sickle Cell disease. Pediatr Blood Cancer. 2019;66:e27722. doi:10.1002/pbc.27722
  • Treadwell M, Telfair J, Gibson RW, et al. Transition from pediatric to adult care in sickle cell disease: establishing evidence-based practice and directions for research. Am J Hematol. 2011;86:116–120.
  • Hibbard JH, Stockard J, Mahoney ER, et al. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39:1005–1026.
  • Speller-Brown B, Patterson KK, VanGraafeiland B, et al. Measuring transition readiness: a correlational study of perceptions of parents and adolescents and young adults with Sickle Cell disease. J Pediatr Nurs. 2015;30:788–796.