Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth With Sickle Cell Disease

Published:August 10, 2021DOI:



      Adolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD.


      We developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD.


      Ninety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58–4.15, P < .0001), disease knowledge scale (8.91–10.13, P < .0001), Adolescent Medication Barriers Scale (40.05–35.39, P = .003) and confidence in both disease (22.5–23.96, P = .048) and pain management (25.07–26.61, P = .003) for youth with SCD.


      The TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.


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        • Kato GJ
        • Piel FB
        • Reid CD
        • et al.
        Sickle cell disease.
        Nat Rev Dis Primers. 2018; 4: 18010
        • Brousseau DC
        • Owens PL
        • Mosso AL
        • et al.
        Acute care utilization and rehospitalizations for sickle cell disease.
        JAMA. 2010; 303: 1288-1294
        • Paulukonis ST
        • Eckman JR
        • Snyder AB
        • et al.
        Defining sickle cell disease mortality using a population-based surveillance system, 2004 through 2008.
        Public Health Rep. 2016; 131: 367-375
        • Berry JG
        • Hall DE
        • Kuo DZ
        • et al.
        Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals.
        JAMA. 2011; 305: 682-690
        • Kayle M
        • Docherty SL
        • Sloane R
        • et al.
        Transition to adult care in sickle cell disease: a longitudinal study of clinical characteristics and disease severity.
        Pediatr Blood Cancer. 2019; 66: e27463
        • Green NS
        • Manwani D
        • Qureshi M
        • et al.
        Decreased fetal hemoglobin over time among youth with sickle cell disease on hydroxyurea is associated with higher urgent hospital use.
        Pediatr Blood Cancer. 2016; 63: 2146-2153
      1. Supporting the health care transition from adolescence to adulthood in the medical home.
        Pediatrics. 2011; 128: 182-200
        • White PH
        • Cooley WC
        • et al.
        Supporting the health care transition from adolescence to adulthood in the medical home.
        Pediatrics. 2018; 142: e20182587
        • Bemrich-Stolz CJ
        • Halanych JH
        • Howard TH
        • et al.
        Exploring adult care experiences and barriers to transition in adult patients with sickle cell disease.
        Int J Hematol Ther. 2015; 1: 1-13
        • McManus MA
        • Fox H
        • O'Connor K
        • et al.
        Pediatric Perspectives and Practices on Transitioning Adolescents With Special Needs to Adult Health Care.
        National Alliance to Advance Adolescent Health, Washington, DC2008
        • Okumura MJ
        • Kerr EA
        • Cabana MD
        • et al.
        Physician views on barriers to primary care for young adults with childhood-onset chronic disease.
        Pediatrics. 2010; 125: e748-e754
        • Lebensburger JD
        • Bemrich-Stolz CJ
        • Howard TH
        Barriers in transition from pediatrics to adult medicine in sickle cell anemia.
        J Blood Med. 2012; 3: 105-112
        • Society for Adolescent H, Medicine
        Transition to adulthood for youth with chronic conditions and special health care needs.
        J Adolesc Health. 2020; 66: 631-634
        • Davidson LF
        • Doyle M
        • Silver EJ
        Multidisciplinary support for healthcare transitioning across an urban healthcare network.
        J Pediatr Nurs. 2015; 30: 677-683
        • Esparza A
        • Calhoun E.
        Measuring the impact and potential of patient navigation: proposed common metrics and beyond.
        Cancer. 2011; 117: 3537-3538
        • Allemang B
        • Allan K
        • Johnson C
        • et al.
        Impact of a transition program with navigator on loss to follow-up, medication adherence, and appointment attendance in hemoglobinopathies.
        Pediatr Blood Cancer. 2019; 66: e27781
        • Mackie AS
        • Rempel GR
        • Kovacs AH
        • et al.
        A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study.
        BMC Cardiovasc Disord. 2016; 16: 127
        • Luke A
        • Doucet S
        • Azar R.
        Paediatric patient navigation models of care in Canada: an environmental scan.
        Paediatr Child Health. 2018; 23: e46-e55
        • Griffin A
        • Gilleland J
        • Johnson A
        • et al.
        Applying a developmental–ecological framework to sickle cell disease transition.
        Clin Pract Pediatr Psychol. 2013; 1: 250
        • Wang G
        • McGrath BB
        • Watts C.
        Health care transitions among youth with disabilities or special health care needs: an ecological approach.
        J Pediatr Nurs. 2010; 25: 505-550
        • Erickson SJ
        • Gerstle M
        • Feldstein SW
        Brief interventions and motivational interviewing with children, adolescents, and their parents in pediatric health care settings: a review.
        Arch Pediatr Adolescent Med. 2005; 159: 1173-1180
        • Davidson LF
        • Doyle M
        • Silver EJ.
        Discussing future goals and legal aspects of health care: essential steps in transitioning youth to adult-oriented care.
        Clin Pediatr (Phila). 2017; 56: 902-908
      2. FloridaHATS. Health care transition training for health care professionals. Florida Health and Transitions Services. Available at: Accessed December 10, 2019

      3. HSC Healthcare System. Health care transition for adolescents and young adults—an online video CME/CEU series. Health Services for Children with Special Needs, Inc. Available at: Accessed December 10, 2019

        • Wood DL
        • Sawicki GS
        • Miller MD
        • et al.
        The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity.
        Acad Pediatr. 2014; 14: 415-422
        • GotTransition® National Health Care Transition Center
        Six Core Elements of Health Care Transition™.
        Center for Medical Home Improvement, 2011 (Available at:) (Accessed December 10, 2019)
      4. SickKids. My Health Passport. The hospital for sickchildren Available at: 2011. Accessed December 10, 2019.

        • 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 Pulmonol. 2013; 26: 128-139
        • Nathan RA
        • Sorkness CA
        • Kosinski M
        • et al.
        Development of the asthma control test: a survey for assessing asthma control.
        J Allergy Clin Immunol. 2004; 113: 59-65
        • Karsh BT
        Beyond usability: designing effective technology implementation systems to promote patient safety.
        Qual Saf Health Care. 2004; 13: 388-394
        • McPherson M
        • Thaniel L
        • Minniti CP
        Transition of patients with sickle cell disease from pediatric to adult care: assessing patient readiness.
        Pediatr Blood Cancer. 2009; 52: 838-841
        • Bronx
        New York Education Data from the 2019.
        American Community Survey, 2019 (Available at:) (Accessed April 2020)