Skip to content
Licensed Unlicensed Requires Authentication Published by De Gruyter July 30, 2015

Development of a sickle cell disease readiness for transition assessment

  • Marsha Treadwell EMAIL logo , Shirley Johnson , India Sisler , Matthew Bitsko , Ginny Gildengorin , Rogelio Medina , Fernando Barreda , Kimberly Major , Joseph Telfair and Wally R. Smith


Background: Instrumentation with established reliability and validity is not yet routinely utilized to assess readiness for transition from pediatric to adult care for youth and young adults with chronic conditions, including sickle cell disease (SCD).

Objective: The aim of this study was to develop a SCD specific readiness for transition assessment tool.

Subjects: Fifty-seven youths with SCD, ages 15–21 years, completed the initial version of the Transition Intervention Program – Readiness for Transition (TIP-RFT) assessment; 113 youths/young adults with SCD, ages 14–26 years, at two distinct sites of care completed a refined version of the TIP-RFT.

Methods: The TIP-RFT was constructed based on a literature review, provider and patient consensus and assessed domains including knowledge and skills in medical self-care, social support, health benefits and independent living and educational/vocational skills. We used principal components factor analysis to evaluate TIP-RFT responses and assessed differences in TIP-RFT scores in relation to age, gender, sickle cell diagnosis and site of care.

Results: The original TIP-RFT, which had demonstrated face validity, was reduced from 56 to 22 items. The revised instrument consisting of four subscales demonstrated good internal consistency reliability and construct validity.

Conclusion: Our results support that the TIP-RFT is a valid and reliable tool for the assessment of transition readiness for youths with SCD. The TIP-RFT assessment can guide interventions to improve transition readiness and can provide a foundation for future research on other variables that might be associated with transition readiness.

Corresponding author: Marsha Treadwell, PhD, Department of Hematology/Oncology, UCSF Benioff Children’s Hospital Oakland, 747 52nd Street, Oakland, CA 94609, USA, Phone: +1-510-428-3356, Fax: +1-510-450-7953, E-mail:


This publication was made possible by grants from the Health Resources and Services Administration (HRSA) Sickle Cell Disease Treatment Demonstration Project, Grant Numbers U1EMC16492 and U1EMC27862. Further support came from the National Center for Advancing Translational Sciences, National Institutes of Health (NIH), through UCSF-CTSI Grant Number UL1 TR000004. Support for Richmond, VA staff was provided by Grant Numbers 1U54HL090516, 1U10HL083732 and R18HL112737 from the National Heart, Lung, and Blood Institute, NIH, by a grant from the Richmond Memorial Health Foundation, entitled Program for Child to Adult Transition of Sickle Cell Care. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of HRSA, the NIH or the Richmond Memorial Health Foundation.


1. Pinckney RB, Stuart GW. Adjustment difficulties of adolescents with sickle cell disease. J Child Adolesc Psychiatr Nurs 2004;17:5–12.10.1111/j.1744-6171.2004.00005.xSearch in Google Scholar PubMed

2. Jenerette C, Valrie C. The influence of maternal behaviors during childhood on self-efficacy in individuals with sickle cell disease. J Fam Nurs 2010;16:422–34.10.1177/1074840710385000Search in Google Scholar PubMed

3. Hamideh D, Alvarez O. Sickle cell disease related mortality in the United States (1999–2009). Pediatr Blood Cancer 2013;60:1482–6.10.1002/pbc.24557Search in Google Scholar PubMed

4. Debaun MR, Telfair J. Transition and sickle cell disease. Pediatrics 2012;130:926–35.10.1542/peds.2011-3049Search in Google Scholar PubMed

5. Blinder MA, Vekeman F, Sasane M, Trahey A, Paley C, et al. Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs. Pediatr Blood Cancer 2013;60:828–35.10.1002/pbc.24459Search in Google Scholar PubMed

6. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011;128:182–200.10.1542/peds.2011-0969Search in Google Scholar PubMed

7. McManus M, White P, Beck D, Ablan M. Got Transition/Center for Health Care Transition. Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health 2014–2015. Available at: Accessed on 21 April, 2015.Search in Google Scholar

8. Treadwell M, Telfair J, Gibson RW, Johnson S, Osunkwo I. Transition from pediatric to adult care in sickle cell disease: establishing evidence-based practice and directions for research. Am J Hematol 2011;86:116–20.10.1002/ajh.21880Search in Google Scholar PubMed PubMed Central

9. Grigorenko EL. Dynamic assessment and response to intervention: two sides of one coin. J Learn Disabil 2009;42:111–32.10.1177/0022219408326207Search in Google Scholar PubMed PubMed Central

10. Bond LA. Norm- and criterion-referenced testing. Practical Assessment, Research & Evaluation. Available at: Accessed on 27 March, 2015.Search in Google Scholar

11. Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ – Transition Readiness Assessment Questionnaire. J Pediatr Psychol 2011;36:160–71.10.1093/jpepsy/jsp128Search in Google Scholar PubMed PubMed Central

12. Stinson J, Kohut SA, Spiegel L, White M, Gill N, et al. A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int J Adolesc Med Health 2014;26:159–74.10.1515/ijamh-2013-0512Search in Google Scholar PubMed

13. Zhang LF, Ho JS, Kennedy SE. A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Pediatr 2014;14:4.10.1186/1471-2431-14-4Search in Google Scholar

14. Schwartz LA, Daniel LC, Brumley LD, Barakat LP, Wesley KM, et al. Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development. J Pediatr Psychol 2014;39:588–601.10.1093/jpepsy/jsu028Search in Google Scholar

15. 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;52:838–41.10.1002/pbc.21974Search in Google Scholar

16. Pediatrics AAo, Physicians AAoF, Medicine ACoP-ASoI. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110:1304–6.10.1542/peds.110.S3.1304Search in Google Scholar

17. Anie KA, Telfair J. Multi-site study of transition in adolescents with sickle cell disease in the United Kingdom and the United States. Int J Adolesc Med Health 2005;17:169–78.10.1515/IJAMH.2005.17.2.169Search in Google Scholar

18. Telfair J, Ehiri JE, Loosier PS, Baskin ML. Transition to adult care for adolescents with sickle cell disease: results of a national survey. Int J Adolesc Med Health 2004;16:47–64.10.1515/IJAMH.2004.16.1.47Search in Google Scholar

19. Telfair J, Myers J, Drezner S. Transfer as a component of the transition of adolescents with sickle cell disease to adult care: adolescent, adult, and parent perspectives. J Adolesc Health 1994;15:558–65.10.1016/1054-139X(94)90139-TSearch in Google Scholar

20. Smith WR, Godder K, Sisler I, Smith V, Casper R, et al. Readiness for transition from pediatric sickle cell care: exploratory analyses of domains of readiness and total scores. Blood 2010;116:1066.10.1182/blood.V116.21.2576.2576Search in Google Scholar

21. StataCorp. Stata Statistical Software: Release 13. College Station, TX: StataCorp LP, 2013.Search in Google Scholar

22. Edwards R, Telfair J, Cecil H, Lenoci J. Self-efficacy as a predictor of adult adjustment to sickle cell disease: one-year outcomes. Psychosom Med 2001;63:850–8.10.1097/00006842-200109000-00020Search in Google Scholar PubMed

23. Jordan L, Swerdlow P, Coates TD. Systematic review of transition from adolescent to adult care in patients with sickle cell disease. J Pediatr Hematol Oncol 2013;35:165–9.10.1097/MPH.0b013e3182847483Search in Google Scholar PubMed

24. Okumura MJ, Heisler M, Davis MM, Cabana MD, Demonner S, et al. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med 2008;23:1621–7.10.1007/s11606-008-0716-8Search in Google Scholar PubMed PubMed Central

25. Halfon N, Hochstein M. Life course health development: an integrated framework for developing health, policy, and research. Milbank Q 2002;80:433–79.10.1111/1468-0009.00019Search in Google Scholar PubMed PubMed Central

26. Reinherz HZ, Paradis AD, Giaconia RM, Stashwick CK, Fitzmaurice G. Childhood and adolescent predictors of major depression in the transition to adulthood. Am J Psychiatry 2003;160:2141–7.10.1176/appi.ajp.160.12.2141Search in Google Scholar PubMed

Received: 2015-2-10
Accepted: 2015-5-11
Published Online: 2015-7-30
Published in Print: 2016-5-1

©2016 by De Gruyter

Downloaded on 24.2.2024 from
Scroll to top button