Moving from a “model of care … that is family centered to one that’s self-driven is an abrupt transition that can be difficult for some patients,” says Dr. Nigrovic. Also, some parents may worry about their now-adult child’s health and want to retain control over his or her medical care, he says. “We typically find it best to manage family involvement on a case-by-case basis, most often easing the family gradually out of the decision process while recognizing that the final responsibility always resides with the adult patient.”
Transition should be carefully planned on an ad hoc basis, tailored to suit the individual patient, his or her family, finances or insurance coverage, and schedule with school, work or both, says Dr. Nigrovic. Most importantly, a patient needs to be emotionally prepared to take on new responsibilities. For cases where he expects transition to be challenging, Dr. Nigrovic may begin the process by first meeting the patient at Boston Children’s Hospital, even taking over care there so patients feel confident that no important medical issues will be neglected upon transfer.
“Every individual [differs in] how ready they are to be in charge of their own care. The process of independence, in most cases, happens gradually, naturally and doesn’t have to be forced” by parents, doctors or the healthcare system, he says. In the first few clinic visits, parents may accompany the young patient. Once they feel secure their child is ready to self-manage their care without their constant input, they’ll drop back.
“Some patients may need more logistical support. Originally, we thought that most transitioning patients would need a lot of help organizing their schedules and treatments, but most have not needed much.”
Some individuals face emotional and practical challenges as they grow up with a rheumatic disease. They may delay taking on care responsibilities or even thinking about what’s down the road, he says.
“In normal childhood, kids start to think seriously about their future, about money, jobs and lifelong ambitions, beginning in early adolescence. But if they are sick, their attention is diverted to focusing on their health. If a kid is lying in the hospital with a fever, you don’t ask what he wants to do after high school. Often, we see vocational problems among these patients. If a child is sick during the high school years, it’s hard to make the jump to college, or they may have physical disabilities that make it hard to get a job,” says Dr. Nigrovic. Some of his transitioning patients are small in stature or have joint deformities, and employers simply don’t give them a chance. “I try to hook them up with social workers, but we would like to do better.”