Survey of healthcare experiences of Australian adults living with rare diseases

Table 4 Information received at the time of diagnosis^a

	Number of people	% of Response
Understanding of information provided (n = 578)
Did not understand all the information	289	50.0
Understood all the information	289	50.0
Who provided information^b (n = 578)
General practitioner	73	12.5
Medical specialist	486	82.9
Genetic counsellor	82	14
Allied health professional	16	2.7
Other	42	7.2
Format of information provided at diagnosis^b (n = 578)
Printed material (e.g., brochures, leaflet)	188	32.1
Referred to website	156	26.6
Social media	87	14.8
Journal article	79	13.5
Verbal only^c	183	31.2
Other	9	1.5

^aAmong respondents who received information at the time of diagnosis (n = 586)
^bMultiple responses reported
^cRespondents were not given this option to choose. Instead it was nominated as a response to the option ‘other’

ISSN: 1750-1172