Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Exploring clinical trials awareness, information access and participation amongst Australians with ovarian cancer: a qualitative study (#216)

Natalie Williams 1 2 , Hayley Russell 2 , Bridget Bradhurst 2
  1. Curtin School of Nursing, Curtin University, Bentley, Western Australia, Australia
  2. Ovarian Cancer Australia, Melbourne, VIC, Australia

Aims

Ovarian cancer is associated with late-stage diagnosis and poor survival rates. Clinical trials may improve quality of life, survival outcomes and treatment options when initial efforts have been exhausted. Challenges exist to clinical trials awareness and participation, and perspectives of Australians with ovarian cancer have not been previously investigated. This study aimed to investigate clinical trials awareness, information access and participation amongst Australians with ovarian cancer.

Methods

An exploratory qualitative approach was utilised in phase one of this two phase study. Women with ovarian cancer participated in online focus groups and interviews between December 2023 and February 2024. Data saturation was achieved after inclusion of 16 participants. Transcripts underwent inductive content analysis.

Results

Five themes and five sub-themes emerged.

  1. Barriers to clinical trial awareness and participation: including, personal factors, practical challenges, communication, eligibility and availability, finding information and understanding options.
  2. Information sources, needs and solutions (subthemes: centralised, credible source; modes of communication; what we want to know). Information was accessed from a wide range of sources. Suggestions included a centralised trusted source of information and clinical trial matching.
  3. Self-advocacy. Women prompted health professionals to discuss clinical trials, asked questions and researched options themselves.
  4. Altruism as a motivator. Willingness to participate was linked to a desire to help others, making a difference and improving care for future people with ovarian cancer.
  5. Emotional impacts of care (subthemes: feeling left behind; feeling fortunate). Women expressed emotions ranging from positivity about the future, living in hope and feeling fortunate, to fear, disappointment and frustration.

Conclusions

These qualitative insights informed the development of a cross-sectional survey for national distribution in phase two of the study. Results from both phases will be collectively used to address identified barriers by developing innovative solutions to improve access to information about clinical trials.