Accessible Requires Authentication Published by De Gruyter July 30, 2015

Development of a sickle cell disease readiness for transition assessment

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

Abstract

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:

Acknowledgments

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.

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

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