CNF Statement Addresses Transition from Pediatric Neurology into Adult Care

The Child Neurology Foundation (CNF) recently published a statement in the journal Neurology to address the role of neurologists in transferring pediatric patients into the adult healthcare system.

The statement was published in July 27 issue under the title “The neurologist’s role in supporting transition to adult health care: A consensus statement.”

At its best, transition of care should be a fluid process that allows young adults to maintain access to care that is appropriate to their medical and developmental needs, in order to maintain long-term function and well-being from pediatric to adult services.

According to the Department of Health and Human Services’ Maternal and Child Health Bureau (MCHB), the transitory period is a necessary step forward, but statics show that only 1 in 6 patients receive the neccessary resources that could make the transition run smoothly.

Dr. Lawrence Brown, chair of the CNF Transition Project Advisory Committee and Authoring Panel, said in a press release, “With so many patients, caregivers and healthcare providers struggling with the current system, it is imperative that healthcare professionals and patients have tools in place to help facilitate dialogue and maintain optimal treatment. We’re hopeful that the consensus statement outlined in Neurology will help ensure that all patients receive and maintain high-quality, comprehensive care during this important transition phase.”

It is well-documented that the transition can cause some decline in health due to real life factors such as patient regimen adherence or changes with insurance coverage.

A report titled “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home,” published in 2011 by the AAP, the American Academy of Family Physicians and the American College of Physicians in Pediatrics, revealed that only 40% of patients and caregivers even discuss the transition with healthcare teams.

The consensus statement includes a neurology-specific review of literature and discussion, common principle recommendations about responsibilities of the child and adult neurologist, discussion of co-management between primary care providers and specialists, and five disease-specific vignettes illustrating implementation of the core principles. The five diseases are generalized epilepsy, muscular dystrophy (MD), fragile X, tuberous sclerosis complex and attention deficit hyperactivity disorder (ADHD).

The content was developed by the CNF, with input from an interdisciplinary panel of 13 experts. The recommendations were endorsed by the American Academy of Neurology (AAN), Child Neurology Society (CNS) and American Academy of Pediatrics (AAP). Eisai, a company focused on epilepsy care, co-sponsored the project.

“This consensus statement provides critical information to the healthcare community, including patients and caregivers, to help make improvements in the transition of care,” said Timothy Clark, senior director of Government Affairs and Policy at Eisai.

Members of the authoring panel are currently working to provide information and resources concerning transitional care to the community at large.