Living with a rheumatic disease presents many challenges for adolescents. To help them meet these challenges and become healthy independent adults, teams need to foster an environment of comprehensive medical care which includes addressing transition. Transitioning adolescents to adult care is a complex process; which requires ongoing coordination and continuity of care. The Multidisciplinary team at a Midwest Rheumatology Center identified a need to develop a quality improvement initiative addressing transition to adult care to ensure a seamless transition for their patients.

Many childhood rheumatic conditions are lifelong; > 50% of youth with Juvenile Idiopathic Arthritis (JIA) will have active disease as adults, requiring complex aggressive therapies. National surveys show that adolescents, parents, and young adults are not prepared to meet the challenges essential for transitioning to adult health care. Often as a result of navigating the change to adult healthcare services unprepared the health care of the young adults is compromised. Data from surveys on transition shows that without education regarding transition young adults have declining health, less than optimal quality of care, resulting in increased health care costs. Prior to instituting a formal quality improvement transition program the staff found many adolescents were not prepared to transition as evidenced by missed adult appointments, poor adherence to medications, not calling for refills, and overall lack of knowledge on key issues needed for a successful transition to the adult health care environment.

Methods:

Using the Got Transition model the team developed a formal transition program, starting with drafting a transition policy. This policy outlined a comprehensive educational process for preparing adolescents and their parent’s for the challenges in transitioning. All patients 16 years and older with a chronic rheumatic diagnosis were approached to participate. To begin they received a letter introducing the topic of transition. Next both the adolescent and parent were given a brief questionnaire assessing the teen’s knowledge of their chronic condition/treatment plan and how the adolescent feels they learn best. This information was integrated into an individualized education plan for the adolescent. Each adolescent received a personal health care binder with general information on transitioning as well as individualized educational materials on their diagnosis, and medications/therapies past and present. Counseling for Transition was added to the medical problem list, and a educational transition check list was started in the EMR. A summary pamphlet was developed with pertinent web resources. To engage use of social media a free medical app that mirrored the summary pamphlet was piloted.

Results:

 Early feedback has been positive; adolescents found the binders helpful and are using the medical app. Young adults who transitioned feel more prepared and confident at their first appointment.

Conclusion:

Transition is an ongoing process and taking small steps along the way helps ensure a seamless transfer to adult care.

Refernces: GotTransition.org