Survey of healthcare experiences of Australian adults living with rare diseases

Table 5 Information, knowledge and use of support groups

	Number of people	% of Response
Preferred format for information^a (n = 746)
Referred to website	579	77.6
Social media	419	56.2
Printed material (e.g., brochures, leaflet)	391	52.4
Journal article	368	49.3
Book	257	34.5
DVD	188	25.2
Other	67	9.0
Main source of information^a (n = 746)
Medical specialist	453	60.7
Patient organisation	291	39.0
Other people or families	262	35.1
Own research	112	15.0
GP	86	11.5
Genetic councilor	44	5.9
Allied health professional	38	5.1
Other	202	27.1
Now have sufficient knowledge of condition (n = 744)
Yes	437	58.7
No	203	27.3
Don’t know	104	14.0
Have a specific person to ask questions about condition (n = 737)
Yes	438	59.4
No	299	40.6
Have used a patient support group in past 12 months (n = 620)
Daily	62	10.0
Weekly	47	7.6
Monthly	53	8.6
Several times	98	15.8
Once or twice	72	11.6
Never	288	46.5

ISSN: 1750-1172