Bridge the Culture Chasm
I showed up to the first visit with my adult rheumatologist, but I was 20 minutes late and was told I needed to call to reschedule. I haven’t gotten around to it yet.
As a healthcare team, it can be frustrating to invest significant time and resources into a seemingly comprehensive healthcare transition process, only to have the patient fail to establish care with an adult provider. Orienting patients to differences in pediatric and adult care models is important. For example, visits may be shorter, social work resources more limited, approaches to medication dosing and administration may vary, and no-show and late policies are more strictly enforced. Explaining these differences before transfer and validating different approaches to care will help the AYA and their family form a trusting relationship with their new provider.
Instead of referring to transfer as “when we’re kicking you out,” frame transfer as a positive developmental milestone and express confidence in the adult provider. Moreover, emphasizing that adult providers are far better equipped to manage their future needs, such as pregnancy, can help AYAs better understand the reason for transfer.
For the adult rheumatologist, the first visit should be viewed as a critical opportunity to gain the trust of the transferring AYA and their family. The WELCOME mnemonic is a helpful tool developed by Rebecca E. Sadun, MD, PhD, et al. to aid the adult rheumatologist seeing an AYA patient for the first time.15
In short, prior to starting the visit, the provider should take time to welcome the patient to adult care; explain differences between pediatric and adult care models; let the patient and parents know their respective roles; communicate—reassure the patient you are in touch with the pediatric provider as needed; give the patient and parents an opportunity to ask questions about the new clinic; minimize medical changes during the first visit; and set expectations going forward.
Pediatric and adult providers should continue to partner during the vulnerable time following transfer, with open communication regarding management of medical or psychosocial issues.
Finally, introducing the topic of transition and self-management early can mitigate the sense of abandonment AYA patients and families often report at the time of transfer to adult care. The family should be educated regarding the shared model of care, in which the parental role gradually shifts from care provider to consultant while the patient role shifts from care receiver to care participant, to manager, and ultimately to supervisor/CEO.
Parents should be counseled not to withdraw support completely at the time of transfer to adult care, but rather continue to give responsibility to the AYA based on their self-management skills and offer support when needed. Examples of transition readiness assessments include the Transition Readiness Assessment Questionnaire , the Got Transition Readiness Assessment and the Readiness for Adult Care in Rheumatology questionnaire, which assesses rheumatology-specific transition readiness skills.16
