Conclusions
Our findings demonstrate that participation in an intensive TN
intervention targeting adolescents and young adults 17-20 years old with
SCD over 6-12 months was associated with significant improvement in
transition readiness, disease knowledge, and confidence in disease and
pain management. The intervention was acceptable to youth and feasible
to implement at an urban academic medical center. Further testing of the
feasibility of adapting this TN intervention for telehealth or video
implementation is warranted, as this could allow for more efficient
delivery and for increased impact to a larger patient population as
well. Longer-term assessment is needed to determine whether a transition
navigator intervention improves successful transfer to and retention in
adult care, and if it reduces morbidity, ED reliance and hospitalization
over time.
Authorship: DM, LB, MD, EJS designed the study, analyzed the data and
wrote the manuscript. LD designed the study, analyzed the data and
revised the manuscript RC, DR, RS, SO designed the study, analyzed the
data and reviewed the manuscript. DM oversaw the study conduct and data
collection. JJ analyzed the data and wrote the manuscript. MM, KI, KM,
CM conducted the study, collected data and reviewed the manuscript. EJS
performed statistical analyses.
Conflict of interest statement: The authors declare no competing
financial conflicts.
Data available on request from the authors
References
1. Manwani, D.; Frenette, P. S., Vaso-occlusion in sickle cell disease:
pathophysiology and novel targeted therapies. Blood2013, 122 (24), 3892-8.
2. Kato, G. J.; Piel, F. B.; Reid, C. D.; Gaston, M. H.; Ohene-Frempong,
K.; Krishnamurti, L.; Smith, W. R.; Panepinto, J. A.; Weatherall, D. J.;
Costa, F. F.; Vichinsky, E. P., Sickle cell disease. Nat Rev Dis
Primers 2018, 4 (1), 18010.
3. Shankar, S. M.; Arbogast, P. G.; Mitchel, E.; Cooper, W. O.; Wang, W.
C.; Griffin, M. R., Medical care utilization and mortality in sickle
cell disease: a population-based study. Am J Hematol2005, 80 (4), 262-70.
4. Steiner, C. A.; Miller, J. L., Sickle Cell Disease Patients in U.S.
Hospitals, 2004: Statistical Brief #21. In Healthcare Cost and
Utilization Project (HCUP) Statistical Briefs , Rockville (MD), 2006.
5. Brousseau, D. C.; Owens, P. L.; Mosso, A. L.; Panepinto, J. A.;
Steiner, C. A., Acute care utilization and rehospitalizations for sickle
cell disease. JAMA 2010, 303 (13), 1288-94.
6. Paulukonis, S. T.; Eckman, J. R.; Snyder, A. B.; Hagar, W.;
Feuchtbaum, L. B.; Zhou, M.; Grant, A. M.; Hulihan, M. M., Defining
sickle cell disease mortality using a population-based surveillance
system, 2004 through 2008. Public Health Reports 2016,131 (2), 367-375.
7. Hemker, B. G.; Brousseau, D. C.; Yan, K.; Hoffmann, R. G.; Panepinto,
J. A., When children with sickle-cell disease become adults: lack of
outpatient care leads to increased use of the emergency department.Am J Hematol 2011, 86 (10), 863-5.
8. Berry, J. G.; Hall, D. E.; Kuo, D. Z.; Cohen, E.; Agrawal, R.;
Feudtner, C.; Hall, M.; Kueser, J.; Kaplan, W.; Neff, J., Hospital
utilization and characteristics of patients experiencing recurrent
readmissions within children’s hospitals. JAMA 2011,305 (7), 682-90.
9. Kayle, M.; Docherty, S. L.; Sloane, R.; Tanabe, P.; Maslow, G.; Pan,
W.; Shah, N., Transition to adult care in sickle cell disease: A
longitudinal study of clinical characteristics and disease severity.Pediatr Blood Cancer 2019, 66 (1), e27463.
10. Green, N. S.; Manwani, D.; Qureshi, M.; Ireland, K.; Sinha, A.;
Smaldone, A. M., Decreased fetal hemoglobin over time among youth with
sickle cell disease on hydroxyurea is associated with higher urgent
hospital use. Pediatric blood & cancer 2016, 63(12), 2146-2153.
11. DeBaun, M. R.; Telfair, J., Transition and sickle cell disease.Pediatrics 2012, 130 (5), 926-35.
12. American Academy of Pediatrics; American Academy of Family
Physicians; American College of, P.; Transitions Clinical Report
Authoring Group; Cooley, W. C.; Sagerman, P. J., Supporting the health
care transition from adolescence to adulthood in the medical home.Pediatrics 2011, 128 (1), 182-200.
13. White, P. H.; Cooley, W. C.; Transitions Clinical Report Authoring,
G.; American Academy Of, P.; American Academy Of Family, P.; American
College Of, P., Supporting the Health Care Transition From Adolescence
to Adulthood in the Medical Home. Pediatrics 2018,142 (5).
14. Porter, J. S.; Wesley, K. M.; Zhao, M. S.; Rupff, R. J.; Hankins, J.
S., Pediatric to Adult Care Transition: Perspectives of Young Adults
With Sickle Cell Disease. J Pediatr Psychol 2017,42 (9), 1016-1027.
15. Porter, J. S.; Graff, J. C.; Lopez, A. D.; Hankins, J. S.,
Transition from pediatric to adult care in sickle cell disease:
perspectives on the family role. J Pediatr Nurs 2014,29 (2), 158-67.
16. Bemrich-Stolz, C. J.; Halanych, J. H.; Howard, T. H.; Hilliard, L.
M.; Lebensburger, J. D., Exploring Adult Care Experiences and Barriers
to Transition in Adult Patients with Sickle Cell Disease. Int J
Hematol Ther 2015, 1 (1).
17. McManus, M. A.; Fox, H.; O’Connor, K.; Chapman, T.; MacKinnon, J.,Pediatric perspectives and practices on transitioning adolescents
with special needs to adult health care . National Alliance to Advance
Adolescent Health Washington DC: 2008.
18. McManus, M. A.; Pollack, L. R.; Cooley, W. C.; McAllister, J. W.;
Lotstein, D.; Strickland, B.; Mann, M. Y., Current Status of Transition
Preparation Among Youth With Special Needs in the United States.Pediatrics 2013, 131 (6), 1090-1097.
19. Okumura, M. J.; Kerr, E. A.; Cabana, M. D.; Davis, M. M.; Demonner,
S.; Heisler, M., Physician views on barriers to primary care for young
adults with childhood-onset chronic disease. Pediatrics2010, 125 (4), e748-e754.
20. Sobota, A.; Neufeld, E. J.; Sprinz, P.; Heeney, M. M., Transition
from pediatric to adult care for sickle cell disease: results of a
survey of pediatric providers. Am J Hematol 2011,86 (6), 512-5.
21. Telfair, J.; Ehiri, J. E.; Loosier, P. S.; Baskin, M. L., Transition
to adult care for adolescents with sickle cell disease: results of a
national survey. Int J Adolesc Med Health 2004,16 (1), 47-64.
22. Lebensburger, J. D.; Bemrich-Stolz, C. J.; Howard, T. H., Barriers
in transition from pediatrics to adult medicine in sickle cell anemia.J Blood Med 2012, 3 , 105-12.
23. Lanzkron, S.; Carroll, C. P.; Haywood, C., Jr., Mortality rates and
age at death from sickle cell disease: U.S., 1979-2005. Public
Health Rep 2013, 128 (2), 110-6.
24. American Academy of Pediatrics; American Academy of Family
Physicians; American College of Physicians; American Society of Internal
Medicine, A consensus statement on health care transitions for young
adults with special health care needs. Pediatrics 2002,110 (6), 1304-6.
25. American Academy of, P.; American Academy of Family, P.; American
College of, P.; Transitions Clinical Report Authoring, G.; Cooley, W.
C.; Sagerman, P. J., Supporting the health care transition from
adolescence to adulthood in the medical home. Pediatrics2011, 128 (1), 182-200.
26. Society for Adolescent, H.; Medicine, Transition to Adulthood for
Youth With Chronic Conditions and Special Health Care Needs. J
Adolesc Health 2020, 66 (5), 631-634.
27. Davidson, L. F.; Doyle, M.; Silver, E. J., Multidisciplinary Support
for Healthcare Transitioning Across an Urban Healthcare Network. J
Pediatr Nurs 2015, 30 (5), 677-83.
28. Davidson, L. F.; Chhabra, R.; Cohen, H. W.; Lechuga, C.; Diaz, P.;
Racine, A., Pediatricians Transitioning Practices, Youth With Special
Health Care Needs in New York State. Clin Pediatr (Phila)2015, 54 (11), 1051-8.
29. Calhoun, E. A.; Esparza, A., Patient Navigation: Overcoming
Barriers to Care . Springer: 2017.
30. Esparza, A.; Calhoun, E., Measuring the impact and potential of
patient navigation: proposed common metrics and beyond. Cancer2011, 117 (15 Suppl), 3537-8.
31. Allemang, B.; Allan, K.; Johnson, C.; Cheong, M.; Cheung, P.; Odame,
I.; Ward, R.; Williams, S.; Mukerji, G.; Kuo, K. H. M., Impact of a
transition program with navigator on loss to follow-up, medication
adherence, and appointment attendance in hemoglobinopathies.Pediatr Blood Cancer 2019, 66 (8), e27781.
32. Mackie, A. S.; Rempel, G. R.; Kovacs, A. H.; Kaufman, M.; Rankin, K.
N.; Jelen, A.; Manlhiot, C.; Anthony, S. J.; Magill-Evans, J.; Nicholas,
D.; Sananes, R.; Oechslin, E.; Dragieva, D.; Mustafa, S.; Williams, E.;
Schuh, M.; McCrindle, B. W., A cluster randomized trial of a transition
intervention for adolescents with congenital heart disease: rationale
and design of the CHAPTER 2 study. BMC cardiovascular disorders2016, 16 , 127.
33. Luke, A.; Doucet, S.; Azar, R., Paediatric patient navigation models
of care in Canada: An environmental scan. Paediatr Child Health2018, 23 (3), e46-e55.
34. Champaloux, S. W.; Young, D. R., Childhood chronic health conditions
and educational attainment: a social ecological approach. J
Adolesc Health 2015, 56 (1), 98-105.
35. Griffin, A.; Gilleland, J.; Johnson, A.; Cummings, L.; New, T.;
Brailey, T.; Eckman, J.; Osunkwo, I., Applying a
developmental–ecological framework to sickle cell disease transition.Clinical Practice in Pediatric Psychology 2013, 1(3), 250.
36. Wang, G.; McGrath, B. B.; Watts, C., Health Care Transitions Among
Youth With Disabilities or Special Health Care Needs: An Ecological
Approach. Journal of Pediatric Nursing 2010, 25(6), 505-550.
37. Erickson, S. J.; Gerstle, M.; Feldstein, S. W., Brief interventions
and motivational interviewing with children, adolescents, and their
parents in pediatric health care settings: a review. Archives of
Pediatrics & Adolescent Medicine 2005, 159 (12),
1173-1180.
38. Naar-King, S.; Suarez, M., Motivational interviewing with
adolescents and young adults . Guilford Press: 2011.
39. Davidson, L. F.; Doyle, M.; Silver, E. J., Discussing Future Goals
and Legal Aspects of Health Care: Essential Steps in Transitioning Youth
to Adult-Oriented Care. Clin Pediatr (Phila) 2017,56 (10), 902-908.
40. FloridaHATS Health Care Transition Training for Health Care
Professionals.
https://www.floridahats.org/education-training-for-health-care-professionals/.
41. HSC Healthcare System Health Care Transition for Adolescents and
Young Adults- An Online Video CME/CEU Series.
https://www.hscsnlearning.org/transition/index.php.
42. Wood, D. L.; Sawicki, G. S.; Miller, M. D.; Smotherman, C.;
Lukens-Bull, K.; Livingood, W. C.; Ferris, M.; Kraemer, D. F., The
Transition Readiness Assessment Questionnaire (TRAQ): its factor
structure, reliability, and validity. Acad Pediatr 2014,14 (4), 415-22.
43. GotTransition® National Health Care Transition Center Six Core
Elements of Health Care Transition™.
https://www.gottransition.org/six-core-elements/.
44. SickKids My Health Passport.
http://www.sickkids.ca/good2go/what-we-do/myhealth-passport/index.html.
45. Harris, P. A.; Taylor, R.; Thielke, R.; Payne, J.; Gonzalez, N.;
Conde, J. G., Research electronic data capture (REDCap)—a
metadata-driven methodology and workflow process for providing
translational research informatics support. Journal of biomedical
informatics 2009, 42 (2), 377-381.
46. Karsh, B. T., Beyond usability: designing effective technology
implementation systems to promote patient safety. Qual Saf Health
Care 2004, 13 (5), 388-94.
47. McPherson, M.; Thaniel, L.; Minniti, C. P., Transition of patients
with sickle cell disease from pediatric to adult care: Assessing patient
readiness. Pediatr Blood Cancer 2009, 52 (7),
838-41.
48. Stein, R.; Perrin, J.; Iezzoni, L., Access and medical support for
youth and young adults with chronic health conditions and disabilities.
In Launching Into Adulthood: An Integrated Response to Support
Transition of Youth With Chronic Health Conditions and Disabilities. : ,
Lollar, D. J., Ed. Paul H Brookes Publishing Co: Baltimore, MD, 2010; pp
77-102.
49. Towncharts.com, Bronx, New York Education Data from the 2019
American Community Survey. In Towncharts.com - United States data
powerfully illustrated and interactive. , 2019.
50. Arnett, J. J., Emerging adulthood: The winding road from the
late teens through the twenties . Oxford University Press: 2014.
51. Rouse, C., Uncertain suffering: racial health care disparities
and sickle cell disease . Univ of California Press: 2009.
52. Chew, L. D.; Griffin, J. M.; Partin, M. R.; Noorbaloochi, S.; Grill,
J. P.; Snyder, A.; Bradley, K. A.; Nugent, S. M.; Baines, A. D.; Vanryn,
M., Validation of screening questions for limited health literacy in a
large VA outpatient population. J Gen Intern Med 2008,23 (5), 561-6.
53. Wallace, L. S.; Rogers, E. S.; Roskos, S. E.; Holiday, D. B.; Weiss,
B. D., Brief report: screening items to identify patients with limited
health literacy skills. J Gen Intern Med 2006, 21(8), 874-7.
54. Sawicki, G. S.; Lukens-Bull, K.; Yin, X.; Demars, N.; Huang, I.-C.;
Livingood, W.; Reiss, J.; Wood, D., Measuring the transition readiness
of youth with special healthcare needs: validation of the
TRAQ—Transition Readiness Assessment Questionnaire. Journal of
pediatric psychology 2009 , jsp128.
55. Prochaska, J.; DiClemente, C.; Norcross, J., Handbook of eclectic
psychotherapy. New York: Brunner-Mazel 1986 .
56. Rastogi, D.; Madhok, N.; Kipperman, S., Caregiver Asthma Knowledge,
Aptitude, and Practice in High Healthcare Utilizing Children: Effect of
an Educational Intervention. Pediatr Allergy Immunol Pulmonol2013, 26 (3), 128-139.
57. Nathan, R. A.; Sorkness, C. A.; Kosinski, M.; Schatz, M.; Li, J. T.;
Marcus, P.; Murray, J. J.; Pendergraft, T. B., Development of the asthma
control test: a survey for assessing asthma control. J Allergy
Clin Immunol 2004, 113 (1), 59-65.
58. Simons, L. E.; Blount, R. L., Identifying barriers to medication
adherence in adolescent transplant recipients. J Pediatr Psychol2007, 32 (7), 831-44.