Implementing a new adolescent epilepsy service: Improving patient experience and readiness for transition

Abstract

Aim To implement and appraise a new model of care in terms of: patient experience, knowledge of epilepsy, readiness for transition and emotional and behavioural support in a new purpose‐built facility for adolescents and young adults. Methods The new model of care included: upskilling of neurology staff in adolescent engagement and provision of group education sessions on epilepsy and mental health (MH), along with MH support, in a new purpose‐built adolescent facility. Parameters examined pre‐ and post‐attendance at the new clinic included: adolescent experience of service delivery, transition readiness, emotional and behavioural well‐being, epilepsy knowledge and medication adherence. Results A total of 45 adolescents (mean age 15.7 years) attended the new epilepsy clinic between February 2017 and December 2017. Adolescents felt significantly better informed following education in relation to epilepsy and driving, alcohol/street drugs and birth control/pregnancy. There was no significant improvement in self‐reported medication adherence, transition readiness or mental well‐being at follow‐up. While MH education was ranked highly in terms of importance by adolescents and parents at baseline, attendance at MH education and engagement with MH support was low. Conclusions This paper documents what is important to young people with epilepsy regarding service delivery. The new adolescent service was well received. Based on feedback from adolescents and parents relating to the service, and the suboptimal uptake of MH supports, the model of care has been revised to reduce attendance burden on families and improve patient experience.

Pediatric to Adult Epilepsy Transition in Ambulatory Care: Benefits of a Multidisciplinary Epilepsy Transition Clinic

“…This is associated with decreased patient and family apprehension in the literature endorsing shared transition clinic models. 3,14,27,45,52,57 Our pediatric providers have demonstrated a high level of interest in this care model by utilizing the available electronic medical record (EMR) transition tool and suggested hospital and community-based resources. Over 100 referrals to our clinic have been placed in the 10 months since our inaugural session.…”

“…They address epilepsy and transition topics, which include disease understanding and management, social concerns and discrimination, family planning and risk-taking behaviors, and mental health concerns, with a documented increase in knowledge, and ability to "cope with epilepsy" following the sessions. 16,54,56,57 Assessments can also be used by clinics to individualize adolescent's transition programming and track the acquisition of skills. These include a transition readiness assessment available through "Got Transition" (www.gottransition.org) and the Transition Readiness Assessment Questionnaire (TRAQ), a validated tool for measuring self-management and self-advocacy skills.…”

“…Clinics with periodic transition focused visits alternating with routine neurology followups, adolescent clinics providing both epilepsy and transitional care until transfer, and models with a series of separate transition meetings have all been operationalized. 27,45,52,57 Nationwide Patients and families are given transition policy information at age 14 years, after which the multidisciplinary team helps patients and families to gradually acquire developmentally appropriate epilepsy knowledge and self-management and life skills during their routine epilepsy appointments. An epilepsy and gender-specific "Transition Tool" appears in the electronic medical record at age 14 years and acts as a conversation and education prompt for the medical team, while tracking and documenting progress.…”

Transitional Care Interventions for Youth With Disabilities: A Systematic Review

“…Patient-and caregiver-targeted interventions generally aimed to enhance the transitional readiness, disability-related knowledge, and self-advocacy and management skills of patients and/or their caregivers. This included the use of guided transition appointments at specialized clinics [58][59][60][61][62][63][64][65] ; creation of curricula, informational materials, and/or health care information templates 45,57,66-76 ; development of goals or of a specific transition plan 39, [77][78][79][80][81][82][83][84][85] ; and practical interventions on successful community living, including employment. [86][87][88][89][90][91] Some interventions combined several of the aforementioned approaches.…”

Lost in Transition: The Long and Winding Road Toward Epilepsy Surgery—An Analysis of Obstacles Prior to Surgery and Call for Orchestrated Health Care Efforts in Epilepsy

“…The best mode for transition of care remains a matter of debate. 32 However, it must be noted that it poses a substantial practical problem when important information is lost during the transition. Many patients have been through a disease course lasting for years or even decades and important individual data may no longer be available in adulthood (such as prior MRI or treatment regimen that have been explored in the past).…”