Table 3 Online survey administered to pediatric patients who were seen at least once in an adult care setting. Survey is broken down into three timepoints; preparing for transition, transition, and adjusting to adult care

1

I was ready to transfer to adult care.

2

My parents were ready to transfer to adult care.

3

The transfer to adult care was announced in a timely manner.

4

The timing of the transfer was just about right.

5

I had a say in the timing of the transfer.

No.

Transition

1

There was good collaboration between pediatric and adult care.

2

I received enough information about the transfer to adult care.

3

I understood the roles of my adult care providers before the transition.

4

Meeting the adult care practitioner beforehand was useful.

5

I was well prepared for the transfer to adult care.

No.

Adjusting to Adult Care

1

I felt comfortable in the adult care environment.

2

I am happy with the care I receive in the adult care setting.

3

I was taken care of very well in the adult care setting.

4

When I first met my adult care provider, I knew exactly what was expected of me and what I could expect from him/her.

5

My new care provider was well informed about me and my condition.

6

I have confidence in my adult health care providers.

7

The members of the adult care staff were sensitive to my needs.

8

The way of working and dealings with patients in adult care are similar to what I was used to in pediatric care.

9

Treatment recommendations in the adult care setting are similar to those I used to receive in pediatric care.

10

I don’t really experience many differences between pediatric and adult care.

11

I can manage my medical care well on my own.

12

I felt comfortable navigating the first adult care appointment on my own.

13

I’m still struggling with being cared for in the adult environment.

14

I don’t understand how my medications relate to my treatment plan.

15

I understand how my current insurance coverage relates to my treatment plan.