Patient and parent perspectives on an academic rheumatology transition clinic

Abstract

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.

Keywords: Health care transition; Mind the gap; Patient reported outcomes; Pediatric rheumatology; Rheumatology; Survey research.

Fig. 1

Mind the Gap Patient Reported Results. Patients report that the ACCORD Transition clinic outperforms 20 of 22 evaluated items, with statistically significant results (P = 0.05) observed in nine of these measures. Exceptions include “does not waste my time in clinic” and “provides information to other professionals involved in my health care (e.g., family doctor).” The top three most valuable items identified by patients are: 1) “provides me with honest explanations of my condition and treatment options (including side effects),” 2) “has staff who are very knowledgeable about my disease and latest treatments,” and 3) “allows me to make my own decisions about health-care options in my own time.”.

Fig. 2

Mind the Gap Parent Reported Results. Parents report that the ACCORD Transition clinic underperforms in 23 of 27 evaluated items, with statistically significant results (P = 0.05) observed in 14 of these measures. The four exceptions where the clinic does not underperform include: “has a physical environment that caters for my child’s age group (e.g., appropriate decoration, teenage magazines),” “allows my child to decide who should be in the examination room,” “gives my child opportunities to be seen in clinic alone (if they want to),” and “has staff who I can talk to about sensitive or difficult issues (even if it has nothing to do with my child’s rheumatic disease).” The top three most valuable items identified by parents are: 1) “provides my child with honest explanations of their condition and treatment options (including side effects),” 2) “has staff who are very knowledgeable about rheumatic diseases and the latest treatments,” and 3) “helps me and my child prepare for their move to adult services.”.

Fig. 3

Mind the Gap Discordance between Patient and Parent Reported Results. Comparison of patient and parent perspectives on the ACCORD Transition clinic’s performance across 22 overlapping items from the Mind the Gap survey. Patients are generally more likely than parents to report that the clinic is excelling, except for the item: “has a physical environment that caters to my child’s age group (e.g., appropriate decoration, teenage magazines),” where parents rated the clinic higher. Conversely, parents value these items more than patients in all cases but one: “allows my child to make their own decisions about health-care options in their own time.”.

Fig. 4

Transition Feedback Survey Results. Summary of patient and parent feedback on the successful uptake of Health Care Transition (HCT) curriculum components in the ACCORD Transition clinic. The three highest-rated components were identical for patients and parents: (1) clear explanation of how to reach the office for medical information or appointments, (2) explanation of the transition process in understandable terms, and (3) guidance on the age to transition to an adult provider. The lowest-rated component for both groups was the advice to keep emergency contact and medical information accessible (e.g., in a phone or wallet). Notable discordance was observed in two areas where parents reported higher successful uptake than patients: discussion about the need for health insurance as an adult and creation and sharing of a medical summary. Additionally, while not depicted in the figure, 58 % of patients and 53 % of parents reported feeling “very ready” for the transition to an adult provider, with no significant difference between the groups.