Fig. 1: Summary of responses to the pre-passport survey.

Presented data are rounded to one decimal place so may not sum to exactly 100%. A indicates how often survey respondents interacted with care teams. B demonstrates the experiences of respondents in communicating with care teams. The question on having the person they care for present during medical conversations was aimed at caregivers specifically. Strongly disagree was also an option in the question regarding time spent explaining important medical information, though was not selected by any participants. C indicates the respondents' experience and opinion of using a tool to aid in communication with care teams. D illustrates responses when participants were asked in which situations did they think a ‘hospital passport’ would be the most useful, with the option to select multiple responses. The educational setting encompassed schools; colleges and universities, leisure including restaurants; cafes; cinemas, social including with relatives; friends and/or family/babysitters, extra-curricular clubs including after-school clubs and sports clubs, and activities including soft play; bowling and swimming as examples.