From the St. Jude Children’s Research Hospital, Memphis, TN.
This article is the fourth in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.)
Abstract
- Objective: To describe the use of quality improvement (QI) methodology to implement an assessment tool to evaluate transition readiness in youth with sickle cell disease (SCD).
- Methods: Plan-Do-Study-Act (PDSA) cycles were run to evaluate the feasibility and effectiveness of a provider-based transition readiness assessment.
- Results: Seventy-two adolescents aged 17 years (53% male) were assessed for transition readiness from August 2011 to June 2013. Results indicated that it is feasible for a provider transition readiness assessment (PTRA) tool to be integrated into a transition program. The newly created PTRA tool can inform the level of preparedness of adolescents with SCD during planning for adult transition.
- Conclusion: The PTRA tool may be helpful for planning and preparation of youth with SCD to successfully transition to adult care.
Sickle cell disease (SCD) is one of the most common genetic disorders in the world and is caused by a mutation producing the abnormal sickle hemoglobin. Patients with SCD are living longer and transitioning from pediatric to adult providers. However, the transition years are associated with high mortality [1–4], risk for increased utilization of emergency care, and underutilization of care maintenance visits [5,6]. Successful transition from pediatric care to adult care is critical in ensuring care continuity and optimal health [7]. Barriers to successful transition include lack of preparation for transition [8,9]. To address this limitation, transition programs have been created to help foster transition preparation and readiness.
Often, chronological age determines when SCD programs transfer patients to adult care; however, age is an inadequate measure of readiness. To determine the appropriate time for transition and to individualize the subsequent preparation and planning prior to transfer, an assessment of transition readiness is needed. A number of checklists exist in the unpublished literature (eg, on institution and program websites), and a few empirically tested transition readiness measures have been developed through literature review, semi-structured interviews, and pilot testing in patient samples [10–13]. The Transition Readiness Assessment Questionnaire (TRAQ) and TRxANSITION scale are non-disease-specific measures that assess self-management and advocacy skills of youth with special health care needs; the TRAQ is self-report whereas the TRxANSITION scale is provider-administered [10,11]. Disease-specific measures have been developed for pediatric kidney transplant recipients [12] and adolescents with cystic fibrosis [13]. Studies using these measures suggest that transition readiness is associated with age, gender, disease type, increased adolescent responsibility/decreased parental involvement, and adherence [10–12].
For patients with SCD, there is no well-validated measure available to assess transition readiness [14]. Telfair and colleagues developed a sickle cell transfer questionnaire that focused on transition concerns and feelings and suggestions for transition intervention programming from the perspective of adolescents, their primary caregivers, and adults with SCD [15]. In addition, McPherson and colleagues examined SCD transition readiness in 4 areas: prior thought about transition, knowledge about steps to transition, interest in learning more about the transition process, and perceived importance of continuing care with a hematologist as an adult provider [8]. They found that adolescents in general were not prepared for transition but that readiness improved with age [8]. Overall, most readiness measures have involved patient self-report or parent proxy report. No current readiness assessment scales incorporate the provider’s assessment, which could help better define the most appropriate next steps in education and preparation for the upcoming transfer to adult care.