Lack of Preparedness for Transition of Care Among Adolescent Multiple Sclerosis Patients

Background: Multiple sclerosis (MS) is a chronic demyelinating disease that requires a skillset to navigate the healthcare system. The American Academy of Pediatrics states, “This process {transition} includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood.” Although there are programs in place for other chronic disease states like diabetes and transplant recipients, there is no standard transition of care recommended for MS. The absence of or a delayed transition plan can negatively impact a patient’s care – promoting non-adherence with disease modifying therapies, reliance on emergency care rather than a focus on preventative care, and the continued dependence on caregiver for healthcare needs.

Objectives: To determine the level of readiness for transition to the adult health care system in adolescent patients with multiple sclerosis and their caregivers.

Methods: Our multidisciplinary team developed assessments utilizing the recommendations set forth by the American Academy of Pediatrics. We evaluated 11 patients within the Children’s Medical Center Demyelinating Disease Clinic diagnosed with relapsing remitting MS (RRMS) for at least 6 months, between the ages of 13 and 19 years, and their caregiver. Patients were assessed for readiness to transition to an adult healthcare system, basic knowledge about their disease and management, future plans for career and access to healthcare. Caregivers independently completed a readiness assessment and subjectively rated their child's ability to independently explain their knowledge of MS, communicate with the health care team, acquire medications, obtain financial coverage.  They also rated their anxiety level related to the transition.

Results: Overall we found discrepancies amongst patient, caregiver, and nurse assessments of the adolescent’s readiness to transition. On average, the patients scored 65% on the knowledge assessment, which included questions about pathophysiology, medications, health maintenance and communication.

Conclusions: Patients and caregivers do not reliably assess their readiness for transition. A multidisciplinary transition of care (TOC) program is essential in order to equip adolescent MS patients to navigate the health care system. It is expected that an effective TOC program will positively impact disease outcomes, likely improving medication adherence, reducing hospitalizations and improving overall quality of life.  Future research will evaluate the impact of TOC annually.