Patient and parent perspectives on an academic rheumatology transition clinic

Objectives

To better define components of successful Health Care Transition (HCT) we surveyed patients in an academic Rheumatology Transition clinic at the University of Utah. Results can be used to improve HCT over time.

Methodology

We asked patients and parents to complete Mind the Gap and the Transition Feedback survey as part of a larger registry dataset collected from said Rheumatology Transition clinic. Results from Mind the Gap and the Transition Feedback survey were analyzed. Survey responses are presented as averages.

Results

Sixty-five patients and 42 parents completed Mind the Gap. Patients report that the clinic is outperforming their expectations in 20 of 22 variables. Parents report that the clinic is underperforming their expectations in 23 of 27 variables. Parents value these 22 variables more than the patients. Twenty-four patients and 15 parents completed the Transition Feedback survey. More than 50 % of patients and parents state that the components of HCT curriculum were addressed. 58 % of patients (14 out of 24) reported feeling “very ready” to move to an adult doctor or other health care provider. 53 % of parents (8 out of 15) felt their child was “very ready” to move to an adult doctor or other health care provider.

Conclusion

A difficulty in defining a successful transfer is how to simultaneously integrate the perspective and needs of the patient and parents. This research shows that the values of patients and their parents generally align. However, there are important disparities between these groups. We demonstrate that even in a dedicated Transition clinic, not all components of HCT are being administered and that only half of patients and parents feel prepared to transfer.