Listening to Australians with ovarian cancer: a cross-sectional survey investigating clinical trials awareness, information access and participation
Abstract
Purpose
To inform development of centralised, evidence-based clinical trials resources for Australians with ovarian cancer, a structured understanding of knowledge gaps and resource needs was essential. The study aimed to assist resource development by assessing awareness, information access, and participation in clinical trials of ovarian cancer patients.
Methods
A national, cross-sectional online survey among Australians with ovarian cancer was conducted between October and November 2024. Descriptive and inferential statistics along with qualitative content analyses were conducted. Associations were examined using Chi-Square and Fisher Exact tests.
Results
Surveys from 272 respondents indicated moderate knowledge (
$$\overline{x }$$
x
¯
= 4.46/10, SD = 2.34) and a high perception of importance of clinical trials (
$$\overline{x }$$
x
¯
= 9.27/10, SD = 1.17). 56% of respondents reported not receiving clinical trials information and 44% had sought information themselves. Respondents preferred information by email newsletter (34%), through health professional discussions (20%) and accessing an online information hub (17%). Information access enablers included clinicians being knowledgeable about clinical trials, personalised discussions, and access to a centralised information source. Barriers included fragmented information across websites, use of complex medical language and competing responsibilities as caregivers. A qualitative analysis of open-ended responses (
n
= 96) revealed three core themes: ‘we need better solutions to help find information and participate in clinical trials’, ‘weighing up options’ in their decision to participate, and ‘we want to help improve outcomes for women in the future’.
Conclusions
Results from this study of Australians with ovarian cancer inform actionable change through development of evidence-based, tailored resources. Further solutions and evaluation of intervention effectiveness will continue through sector collaboration.
