Authors :
Presenting Author: Amy Tennant, APRN – Ann & Robert H. Lurie Children's Hospital of Chicago
Stefanie McCormack, MSHC, CCRP – Ann & Robert H. Lurie Children's Hospital of Chicago; Alexa King, MD – Northwestern University Feinberg School of Medicine; Yara Mikhaeil-Demo, MD – Northwestern University Feinberg School of Medicine; Linda Laux, MD – Ann & Robert H. Lurie Children's Hospital of Chicago; David Bieber, MD – Ann & Robert H. Lurie Children's Hospital of Chicago
Rationale:
The transition from pediatric to adult care is a growing area, as more children with disorders previously considered fatal in childhood are surviving into adulthood (Perrin et al., 2007), with growing attention brought to this topic (American Academy of et al., 2011; American Academy of et al., 2002; Brown et al., 2016). We present our experience establishing a transition program based on readily available resources.
Methods:
With the aid of grant funding from the Child Neurology Foundation, Northwestern Hospital and Lurie Children’s Hospital developed a transition program over one year, integrating Got Transition's Core Elements (Got Transition, 2014). The EpiTRAQ readiness assessment questionnaire was adapted from The University of Michigan and incorporated into our electronic medical record (EMR). Patients 14 years and older with an upcoming visit were sent the EpiTRAQ electronically. A brief survey was sent to epilepsy providers for feedback on the EpiTRAQ. For the warm handoff, patients 18 years and older and of normal cognition were selected for a telemedicine visit with their established pediatric and new adult neurology providers.
Results:
Seventy six EpiTRAQ questionnaires were assigned, with overall completion rate of 50%. The majority were done on day of the visit (56%). Amongst English-speaking patients, completion rates were 60%, compared to only 18% of Spanish-speaking patients. Providers were polled two months after the EpiTRAQ go live date, to evaluate if they felt there was an effect on increased discussion about transition during patient visits: 44.4% said yes, 44.4% said no and 11.1% were unsure; with a 75% response rate. There were two warm hand-off visits, each with a three month patient post-visit survey with high satisfaction scores.
Conclusions:
We present the implementation of a transition program using available evidence-based assessment tools and recommended components from medical society consensus statements. Incorporating the EpiTRAQ into the EMR was a success, with aid from the University of Michigan. It provided an automated and reliable assessment of youth readiness for transition. It appeared to spark discussion about the transition to adult care during patient visits. The low number of completed warm hand-off visits reveals areas of ongoing challenge, as previously reported (Camfield et al., 2012; Carrizosa et al., 2014; Fantaneanu et al., 2020). Though not formally tested, the primary barrier was difficulty in care coordination, requiring a dedicated full-time coordinator. The warm hand-off visit was a key component of the transition program, as it allows youth a space to meet their future provider, ask questions and clarify the next steps, which our patients and their families appreciate.
Despite some success with available transition tools, our center's experience echoed the need for a more sustainable framework to address the many barriers medical systems face when creating a successful transition program.
Funding:
Child Neurology Foundation