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128 Development of a diagnosis support tool for those impacted by ovarian cancer in partnership with public and patient involvement
  1. Helena C Bartels1,
  2. Yvonne O’Meara2,3,
  3. Sharon O’Toole3 and
  4. Donal J Brennan1
  1. 1University College Dublin Gynaecological Oncology Group (UCD-GOG), Dublin, Ireland
  2. 2Mater Misericordiae University Hospital and St Vincent’s University Hospital, Dublin, Ireland
  3. 3Irish Society of Gynaecological Oncology Patient and Public Involvement, Dublin, Ireland

Abstract

Introduction/Background Decision aids are a tool used in healthcare to assist patients when facing decisions regarding their treatment options. Their aim is to provide information, present the risks and benefits of each option and to allow the patient explore their values. Decision aids make patients feel more informed and express less regret about treatment decisions. To our knowledge, no decision aids for ovarian cancer management are currently available. Therefore, we sought to develop an aid to assist women at the time of diagnosis of ovarian cancer.

Methodology A decision aid according to the International Patient Decision Aid Standards (IPDAS) for women diagnosed with ovarian cancer being offered either primary cytoreductive surgery or neoadjuvant chemotherapy and interval cytoreductive surgery was developed. A focus group with women with the lived experience of ovarian cancer was held to seek feedback on the decision aid. Participants had reviewed the decision aid prior to the session.

Results Feedback from the focus group provided novel insights into what patients are seeking at the time of diagnosis with ovarian cancer. Patients were unanimous in their description of receiving the diagnosis as traumatic, and rather than seeking a decision aid at this time, they wanted support and reassurance. They sought information that was reliable, short and succinct, and provided reassurance regarding the treatment options. Something tangible to take home in the form of a leaflet or otherwise was desirable. Choice of language was identified as important, with a preference to avoid medical terms and replace ’decision aid’ with ’support tool’. Based on the group feedback, a modified support tool was developed.

Conclusion This work demonstrates the importance of involving the patient voice when healthcare providers are developing resources. Feedback from the focus group resulted in the development of a support tool created in partnership by healthcare providers and patients.

Disclosures None.

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