番茄社区

ORLANDO -- A formal program at one Wisconsin hospital helped teens with chronic rheumatologic disorders transition to adult care, researchers reported here.

To date, 120 participants, ages 16 and up, have been enrolled in the "Got Transition" program, which included a self-assessment questionnaire to determine the patients understanding of the illness, personalized education on diagnosis, treatment, and medication, and a free app containing all medical information, according to Sarah Thomson, RN, of Children's Hospital of Wisconsin in Milwaukee.

"We try to hang onto the children through college, or even until they get a job," Thomson told 番茄社区 at her poster presentation at Rheumatology Nurses Society annual meeting. "But eventually, they need to go to an adult practitioner."

Age 16 is when these children are better able to understand and manage their health issues, she added. "Up until they are teenagers, parents have been responsible for making sure children take their medicine, and go to the doctor, and things like that," Thomson said. "We are trying to transition them to the point where they are doing these things themselves -- knowing when to take their medicine and making doctor's appointment."

About 35% of the enrollees have juvenile idiopathic arthritis while 31% have lupus. Remaining patients have spondyloarthropathy, juvenile dermatomyositis; and other rheumatic conditions.

Other components of the "Got Transition" model are:

• An introductory letter to the next medical team, covering the disorder, list of medications, and medical history. This is often needed when an teen or young adult relocates.
• A transition check list is started in the electronic health record with specific education topics critical for a smooth transition.
• An individualized summary pamphlet of their rheumatic condition is provided with pertinent web site resources.
• Counseling for transition to adult healthcare is added to the medical problem list.

The smart phone app, Healthspek, archives medical history, diagnosis, types of medications, and the location of a pharmacy. "It even has a little notification feature: 'Have you taken your medicine?'," Thomson pointed out. "This transition is so important because if these children/teens don't learn how to take care of themselves during this transition period, and they don't take their medicine, there can be disease exacerbation."

Thomson's group reported that the program was "easy to implement and user friendly. Feedback from adolescents and parents has been positive; they found the transition program helpful to facilitate independence and promote self-management." In addition, young adults who had transition said they felt more prepared and confident at the first appointment with the adult provider.

Making the transition to adult care is "a major problem and a major concern for us and for our patients," noted Annelle Reed, MSN, of Children's of Alabama in Birmingham. "Everyone is working on these programs." Reed was not involved in the study.

One of the issues that children and teens with a chronic illness must contend with the lack of time on the part of providers. "Instead of 30-minute consultations with the pediatric nurse/doctor...the [healthcare provider at the] adult clinic will be spending about 5 minutes with them," Thomson said.