Reports From the Field

Transition Readiness Assessment for Sickle Cell Patients: A Quality Improvement Project

Journal of Clinical Outcomes Management. 2014 June;21(6)

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The St. Jude Children’s Research Hospital SCD Transition to Adult Care program was started in 2007 and is a companion program to the SCD teen clinic, serving 250 adolescents aged 12 to 18 years. The transition program curriculum addresses all aspects of the transition process. Based on the curriculum components, St. Jude developed and implemented a transition readiness assessment tool to be completed by providers in the SCD transition program. In this article, we describe our use of quality improvement (QI) methodology to evaluate the utility and impact of the newly created SCD transition readiness assessment tool.

Methods

Transition Program

The transition program is directed by a multidisciplinary team; disciplines represented on the team are medical (hematologist, genetic educator, physician assistant, and nurse coordinators), psychosocial (social workers), emotional/cognitive (psychologists), and academic (academic coordinator). In the program, adolescents with SCD and their families are introduced to the concept of transition to adult care at the age of 12. Every 6 months from 12 to 18 years of age, members of the team address relevant topics with patients to increase patients’ disease knowledge and improve their disease self-management skills. Some of the program components include training in completing a personal health record (PHR), genetic education, academic planning, and independent living skills.

Needs Assessment

Prior to initiation of the project, members of the transition program met monthly to informally discuss the progress of patients who were approaching the age of transition to adult care. We found that adolescents did not appear to be ready or well prepared for transition, including not being aware of the various familial and psychosocial issues that needed to be addressed prior to the transfer to adult care. We realized that these discussions needed to occur earlier to allow more time for preparation and transition planning of the patient, family, and medical team. In addition, members of the team each has differing perspectives and did not have the same information with regard to existing familial and psychosocial issues. The discussions were necessary to ensure all team members had pertinent information to make informed decisions about the patient’s level of transition readiness. Finally, our criteria for readiness were not standardized or quantifiable. As a result, each patient discussion was lengthy, not structured, and not very informative. In 2011, a core group from the transition team attended a Health Resources Services Administration–sponsored Hemoglobinopathies Quality Improvement Workshop to receive training in QI processes. We decided to create a formal, quantitative, individualized assessment of patients’ progress toward transition at age 17.

Readiness Assessment Tool

The assessment is divided into 4 domains based on the disciplines represented on the team: medical, psychosocial, emotional/cognitive, and academic ( Table). Each discipline developed transition readiness items based on the transition curriculum content. The pediatric hematologist, midlevel provider (physician assistant), and nurse case managers developed the medical domain checklist to assess disease literacy, self-management, organ and dysfunction screening. The psychosocial domain checklist was developed by the social workers to assess patients’ understanding of information related to independent living and adult rights (eg, advance directives), emotional concerns related to transition, self-advocacy skills, and completion of a personal health record, a document designed to assist adolescents in learning about their medical history.

The emotional/cognitive domain checklist was developed by the pediatric psychologist and pediatric neuropsychologist. Because the psychology service is set up to see patients referred by the medical team and is unable to see all patients coming to hematology clinic, the emotional/cognitive checklist is based on identifying previous utilization of psychological services including psychotherapy and cognitive testing and determining whether initiation of services is warranted. The academic domain checklist was developed by the academic coordinator who serves as a liaison between the medical team and the school system. This checklist assesses whether the adolescent is meeting high school graduation requirements, able to verbalize an educational/job training plan, on track with future planning (eg, completed required testing), knowledgeable about community educational services, and able to self-advocate (eg, apply for SSI benefits).