Primary care providers are important partners in the management and transition of youth with special health care needs. This is particularly true for youth with rheumatic diseases; pediatric rheumatologists number less than 250 in the United States.1 Patients and their families often have to travel long distances for specialty visits at academic centers and pediatric rheumatologists rely on primary care providers for their knowledge of local community resources, such as physical and occupational therapists, as well as adult rheumatologists who will continue to follow rheumatology patients as they age.
My experience as a pediatric rheumatology nurse practitioner has provided me with the opportunity to work closely with adolescent patients and their families as they transition to adult services. These families express that transition is an overwhelming and sometimes frightening experience. I share my observations here, with the goal of improving the care we provide to our patients during transition; it is my wish that this will ultimately transform a potentially scary experience into a hopeful opportunity for adolescents to develop skills and build on their existing strengths.
Among the rheumatic diseases primary care providers (PCPs) will see in their practices, they are most likely to encounter juvenile idiopathic arthritis (JIA), the fifth most common chronic disease of childhood.2 Attention to the health care transition for youth with JIA is essential, since about one third of these patients will be diagnosed during adolescence3 and more than one third will continue to have active disease as adults.4
In an ideal world, all primary care and specialty practices would have transition coordinators to implement and oversee the process of transition with patients and their families. The reality, however, is that the process of transition must often occur in the setting of limited staff, time, and resources. Making it a point to spend a portion of each visit with your patients on transition is invaluable work.
Transition can be defined as “a purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults as they move from child-centered to adult-oriented health care systems.”5
Transition planning needs to start in early adolescence and take into consideration how JIA impacts the developmental tasks of adolescence. For instance, teens with JIA must adjust to how teratogenic medications affect their sexually maturing bodies, and to the effects of chronic prednisone use on their body image. As they develop a wider perspective, these patients may recognize how their chronic condition affects other members of their families; they then must cope with the varied emotions that this may bring up.
While they learn to form friendships that are mutually close and supportive, teens with JIA must navigate how to explain their condition to others, and if and when to disclose their condition to friends. I have noticed in my work that a particularly challenging aspect of JIA management that teens deal with as they develop abstract thinking skills is the need to continue taking medications even when they are feeling well.
With these issues in mind, the process of transition should be outlined in a written transition plan to be signed by the patient, a parent, and the PCP. A clear outline takes the mystery out of what transition entails and makes it less overwhelming by dividing the process into smaller, more manageable steps. The plan can be broken down into the stages of adolescence (early, middle, and late) and should include the following tasks:6
Able to tell provider what is wrong.
Knows names of medication, dose, reason for taking medication and expected response.
Knows any allergies they may have.
Knows the difference between health…