Original Article

Lessons Learned from Building a Pediatric-to-Adult Sickle Cell Transition Program

Authors: Wally R. Smith, MD, India Y. Sisler, MD, Shirley Johnson, BA, Thokozeni J. Lipato, MD, Jennifer S. Newlin, PA, Zakiya S. Owens, PA, Alma M. Morgan, MEd, Marsha J. Treadwell, PhD, Kathryn Polak, MS

Abstract

Objective: More effective transitions and transfers of young people with sickle cell disease (SCD) into the adult healthcare setting is a focus of both primary care and specialty care medical organizations. Effective transition and transfer requires six core elements: establishing a policy, tracking progress, administering transition readiness assessments, planning for adult care, transferring to adult care, and integrating into an adult practice. We developed a program using these six core elements. The objective of our report was to assess the development and implementation of this program.

Methods: We used the six core elements to develop and implement a program at Virginia Commonwealth University for children and adolescents with SCD to transition to adult health care.

Results: We assessed individuals’ differences by age and grade, their independent living skills, their feelings about moving to adult care; tallied and analyzed several assessment scales; and assessed transfer success and patient retention.

Conclusions: The principles and lessons we learned in developing and implementing this program over 5 years, accompanied by caring, flexible, and dedicated care team members, often can overcome even severe barriers to care transitions.
Posted in: Hematology10

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References

1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, et al. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011;128:182-200.
2. Got Transition. Got transition toolkit. www.gottransition.org. Accessed December 16, 2018.
3. American Society of Hematology. ASH transition toolkit. http://www.hematology.org/Advocacy/Policy-News/2016/5581.aspx. Accessed December 16, 2018.
4. Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 2005;115:1607-1612.
5. Romelczyk S, Homan S, Telfair J, et al. Healthcare coordination and transition for individuals with genetic conditions. Matern Child Health J 2015;19:2215-2222.
6. DeBaun MR, Telfair J. Transition and sickle cell disease. Pediatrics 2012;130:926-935.
7. 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.
8. Bobo L, Miller ST, Smith WR, et al. Health perceptions and medical care opinions of inner-city adults with sickle cell disease or asthma compared with those of their siblings. South Med J 1989;82:9-12.
9. Aisiku IP, Penberthy LT, Smith WR, et al. Patient satisfaction in specialized versus nonspecialized adult sickle cell care centers: the PiSCES study. J Natl Med Assoc 2007;99:886-890.
10. Evensen CT, Treadwell MJ, Keller S, et al. Quality of care in sickle cell disease: cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care. Medicine (Baltimore) 2016;95:e4528.
11. Smith WR, McClish DK, Lottenberg R, et al. Comparison of adult and adolescent quality of ambulatory and emergency care in sickle cell disease: ASCQ-Me and the SHIP-HU study. Blood 2017;130:2258.
12. Wang CJ, Kavanagh PL, Little AA, et al. Quality-of-care indicators for children with sickle cell disease. Pediatrics 2011;128:484-493.
13. Kanter J, Dampier C, Agodoa I, et al. Quality of care in United States children with sickle cell anemia. Blood 2017;130:2098.
14. Bundy DG, Richardson TE, Hall M, et al. Association of guideline-adherent antibiotic treatment with readmission of children with sickle cell disease hospitalized with acute chest syndrome. JAMA Pediatr 2017;171:1090-1099.
15. Yawn BP, Buchanan GR, Afenyi-Annan AN, et al. Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. JAMA 2014;312:1033-1048.
16. DeBaun MR. The challenge of creating an evidence-based guideline for sickle cell disease. JAMA 2014;312:1004-1005.
17. McCavit TL, Zhang S, Ahn C, et al. Quality of care in hospitalizations for sickle cell disease in the U.S.: do low patient volumes mean higher mortality? Blood 2008;112:166.
18. Oyeku SO, Faro EZ. Rigorous and practical quality indicators in sickle cell disease care. Hematology Am Soc Hematol Educ Program 2017;2017:418-422.
19. Sobota AE, Shah N, Mack JW. Development of quality indicators for transition from pediatric to adult care in sickle cell disease: a modified Delphi survey of adult providers. Pediatr Blood Cancer 2017;64.
20. Treadwell M, Johnson S, Sisler I, et al. Development of a sickle cell disease readiness for transition assessment. Int J Adolesc Med Health 2016;28:193-201.
21. Treadwell M, Johnson S, Sisler I, et al. Self-efficacy and readiness for transition from pediatric to adult care in sickle cell disease. Int J Adolesc Med Health 2016;28:381-388.
22. Telfair J, Ehiri JE, Loosier PS, et al. Transition to adult care for adolescents with sickle cell disease: results of a national survey. Int J Adolesc Med Health 2004;16:47-64.
23. Smith WR, Bovbjerg VE, Penberthy LT, et al. Understanding pain and improving management of sickle cell disease: the PiSCES study. J Natl Med Assoc 2005;97:183-193.
24. McClish DK, Smith WR, Levenson JL, et al. Comorbidity, pain, utilization, and psychosocial outcomes in older versus younger sickle cell adults: the PiSCES project. Biomed Res Int 2017;2017:407-547.
25. Smith WR, McClish DK, Dahman BA, et al. Daily home opioid use in adults with sickle cell disease: the PiSCES project. J Opioid Manag 2015;11:243-253.
26. Edwards R, Telfair J, Cecil H, et al. Reliability and validity of a self-efficacy instrument specific to sickle cell disease. Behav Res Ther 2000;38:951-963.
27. Edwards R, Telfair J, Cecil H, et al. Self-efficacy as a predictor of adult adjustment to sickle cell disease: one-year outcomes. Psychosom Med 2001;63:850-858.
28. Clay OJ, Telfair J. Evaluation of a disease-specific self-efficacy instrument in adolescents with sickle cell disease and its relationship to adjustment. Child Neuropsychol 2007;13:188-203.
29. Smith WR, Godder K, Sisler I, et al. Readiness for transition from pediatric sickle cell care: exploratory analyses of domains of readiness and total scores. Blood 2010;116:1066.
30. Weibell CJ. Principles of learning: 7 principles to guide personalized, student-centered learning in the technology-enhanced, blended learning environment.
31. Rumbaugh DM, King JE, Beran MJ, et al. A salience theory of learning and behavior: with perspectives on neurobiology and cognition. Int J Primatol 2007;28:973-996.