Adolescent Transition to Adult Health Care
From the Medical Director’s Desk
Adolescent Transition to Adult Health Care
Cerebral palsy (CP) encompasses a group of lifelong chronic conditions affecting body movement, muscle tone, and coordination. The brain lesion causing CP is not progressive and the brain may recover some motor functions controlled by the area of the brain affected. However, secondary disabling conditions (such as joint stiffness or pain) often coexist, emerge, or worsen over time and adversely affect daily functioning and participation in school, community and family activities.
Once CP is diagnosed, an array of therapeutic and support services are initiated through early intervention programs. Therapeutic services continue through the preschool, elementary and high school years (usually as a combination of medical services, special education opportunities, and other community-based programs). The intensity of services and the quality of care for post-adolescent young adults with CP change dramatically as they enter an adult care health care system that is often unfamiliar with a childhood onset disability and/or ill-equipped to optimally attend to their special healthcare requirements.
The purpose of this column is to provide facts concerning the changes in services (and often the quality of care) offered to young adults with CP and to offer concrete suggestions (and a very useful tool) that will aid in pursuing and evaluating the best medical care available to young adults with cerebral palsy. It is important that young adults with CP and their families be familiar with the services they will need and deserve to have in the years going forward.
Changes in services and care, coupled with the “wear and tear” caused by a myriad of factors involved in the natural process of aging can take a toll. Though many adults with CP successfully adapt to life with a disability, the limited surveys that exist indicate a significant proportion of individuals with CP encounter increasing challenges as their lives progress. Decreased activity and participation in physical therapy and fitness programs coupled with loss of strength, contractures, and musculoskeletal pain are prevalent in the adult population and are common factors in the loss of mobility, self-care, and daily performance over time.
Though the health care system cannot provide support in all areas, maximizing key aspects of health services for adolescents with CP during their transition from adolescence to adulthood will likely increase the probability of a more healthful, productive, and satisfying life as an adult with CP. The research literature focusing on adolescents with CP is limited, mostly pointing to the need for more research. The most recent (2009-2010) National Survey of Children with Special Health Care Needs (NS-CSHCN) is the largest nationally representative sample of adolescents with CP in the United States. It provides an opportunity for an updated, analytical look at the health and function of children as they approach adulthood. The survey revealed that adolescents with CP had no higher rates of attention deficit hyperactivity disorder (ADHD), depression, anxiety, oppositional or conduct disorders, or autism spectrum than a comparison group in the same survey composed of adolescents with uncomplicated allergies. However, those with CP participated less in sports, clubs, and other organized activities. Neither group reported receiving sufficient help in coordinating health services or preparing for transition to adult healthcare services. Inadequate adult healthcare services have been shown to have a universal, direct, and unsatisfactory impact on the adult lifespan. Physicians and other healthcare providers who include adolescents with CP in their practices should begin discussion and planning for the special requirements inherent in the transition of their young adolescent patients to optimal adult healthcare.
To help accomplish this, United Cerebral Palsy (UCP) and the Cerebral Palsy International Research Foundation (CPIRF) have produced a one-page guideline for primary care and specialty physicians (and other health care providers) to use in assisting their adolescent patients with cerebral palsy in making a smooth transition through the teen years and into the adult healthcare system. This guideline is a more powerful tool than its length suggests; it is based on medical research concerning “best practices”. We suggest you download this guideline: http://ucp.org/wp-content/uploads/2013/02/Transition-Physicians-Guide.pdf, print it out, and give a copy to the healthcare practitioner at the next clinic visit. Ask the provider to go over each item and discuss various options. You cannot start this process too early in the teen years. An eleventh hour rush to find appropriate health care when the pediatric providers unexpectedly inform you that they cannot provide care beyond a certain age (e.g. 18 or 21) usually results in frustration, if not panic, and disappointment.
James A. Blackman, MD
Blackman JA, Conaway MR. Adolescents with Cerebral Palsy: Transitioning to adult health care services. Clinical Pediatrics 2014:53(4):356-363.
Liptak GS. Health and well being of adults with cerebral palsy. Curr Opin Neurol. 2008;21(2):136-142.
Reddihough DS, Jiang B, Lannigan A, et al. Social outcomes of young adults with cerebral palsy. J intellect Dev Disabil. 2013;38(3):215-222.
Rosenbaum P, Paneth N, Leviton A, et al. A report: The definition and classification of cerebral palsy april 2006. Dev Med Child Neurol (Suppl). 2007;109:8-14.
Transición de adolescentes a adultos salud