Should the age at which patients transition from pediatric to adult care differ depending on the disease diagnosis?

First, a distinction needs to be made between transition (which is a long-term, ongoing process) and transfer of care (which is the act of going to one provider to another). Transition introduction should start early, with recommendations that age 12 is a good beginning to introduce the concepts of the process. The age of transfer can vary with some countries starting as early as 16 years old (as done in the UK), 19 years old (Canada), or no set age guideline (United States- can be 18, 21, 25 depending on local preferences).

We know that patients with childhood-onset systemic lupus erythematosus often have the most challenges with transfer of care, and many interventions have been created to address this; The age of this transfer often is dictated by external factors (hospital/clinic regulations, insurance policies, physical move away from home) and so adapting to the needs of the individual is important. While most patients with inflammatory arthritis such as JIA may be doing well at time of transfer, the disruptions from change, possible loss of medication coverage and insurance can still make this population at similar risk.

Childhood onset diseases can carry issues with morbidity as a result of treatments and the disease itself. These include growth issues (overgrowth or undergrowth), potential problems with bone density, exercise intolerance, early cardiovascular health problems. All of these morbidities can be overlayed with complicating factors of mental health issues and widespread pain, as well. Given that these changes are going on while the body and mind are in development, we know the importance of understanding the various developmental milestones can make for a more effective working patient-provider relationship. The young adult mind is not fully developed until 25 years old, so often expectations that rheumatologist may have of their older patients may not be achieved until that age. As with any patients, young people with rheumatic diseases want their care to be contextualized with their current life events- for many adolescents and young adults, this entails evaluating their educational and vocational goals, and how their care and treatment of their rheumatologic disorder can facilitate achieving them. Being direct about expectations is helpful in developing this relationship as building trust with their adult rheumatologist is often something young people are looking for.

It is not the disease type but more the developmental stage and readiness of patient and family that should dictate the timing of transition. Some 18 year-olds are able to take on their own medical care remarkably well and can transition to adult providers early. Others may need more time to develop the abilities to taken on adult care. In addition, life activities may impact timing of transition. For example, often college students will delay transition to adult care until after graduation and moving on to further schooling vs the work force. Individual with significant cognitive impairment or very complex medical illnesses may stay in the pediatric system longer. In our clinic, we aim to have our young adults transitioned to adult care by age 21 or 22.