The importance of including patient wellbeing as a factor when determining the value of cancer care – the patient perspective

An online survey was conducted in November 2014, with 109 respondents sourced from Ovarian Cancer Australia’s survey group and Facebook community. It saw them rating the importance of wellbeing as a critical factor in defining the value of cancer care and provided consumer insights into what constitutes wellbeing. The results of this study was presented at the Union for International Cancer Control (UICC) in December 2014.

Family history and genetic testing survey

Conducted in April 2015 and results announced in May, Ovarian Cancer Australia’s Family History and Genetic Testing Survey asked women questions about their experiences of ovarian cancer, their symptoms, path to diagnosis (including whether and when they were asked family history questions), if they were offered genetic testing and counselling, and their experiences with receiving results. 183 respondents completed the survey.

Key findings were:

  • That symptom awareness is crucial to the initiation of the diagnosis process
  • Timely diagnosis is a critical area of need. Knowing the symptoms of ovarian cancer could improve time to diagnosis, reduce the number of GP visits and minimise hospital emergency presentations.
  • There is a need to improve women’s confidence in their abilities to know ovarian cancer, to recognise and act upon symptoms. It is vitally important to continue and expand a public awareness campaign.
  • More women with ovarian cancer should be offered genetic testing and they should be offered earlier in the process, preferably at diagnosis.
  • Not all women with ovarian cancer who are eligible are being offered testing – 36% gap, genetic testing cycles are too long – 52% had to wait more than two months for their results – meaning that women may miss out on best treatment options.
  • There needs to be a sufficient healthcare workforce and infrastructute to support the current guidelines for genetic testing and associated counselling and more resources are required to enable faster testing for more women