Article Text
Abstract
Introduction/Background*Endometrial adenocarcinoma (EAC) is rare in reproductive aged women. Patient perspectives of treatment in this cohort have highlighted unmet needs in information provision and decisional conflict around standard surgical treatment or treatment with progestins, and implications for fertility and oncological outcomes. Decision aids have been used to support information provision and clinical decision-making. Patients exposed to decision aids are more knowledgeable, better informed and clearer about their values. We developed and pilot tested a decision aid for reproductive aged women with low grade, early stage EAC.
Methodology A decision aid was developed in accordance with International standards. A literature review and observational data on the treatment perspective of this cohort were used to create the first draft. It was reviewed by key experts including Gynaecology Oncology, Fertility, and Decision Aid Development experts, along with 2 consumers. A finalised draft decision aid was tested amongst healthcare practitioners and consumers. It was distributed with an online survey assessing format, content, length, acceptability, and utility. Seventy-five women aged 18–40 years with early EAC, treated at the Royal Women’s Hospital (RWH), Melbourne, Australia, were identified from patient databases and invited to participate. Online survey links were distributed via mobile text message. Ninety-four multi-disciplinary healthcare providers involved in the care of women with EAC at RWH were identified through the MDT meeting group and invited to participate via email of the survey link.
Result(s)*Nineteen participants completed the survey, 10 consumers, 9 healthcare practitioners. Overall, all respondents liked the decision aid, thought it was relevant, useful and helpful for both consumers and health care practitioners. Improvements to formatting and layout of the decision aid were suggested by both groups. Almost all consumers indicated the amount of information was about right or not enough, compared to half of practitioners expressing concern about too much information, suggesting a mismatch in informational desires between consumers and healthcare practitioners.
Conclusion*The decision aid for young women diagnosed with early EAC was acceptable and useful to patients and healthcare professionals. Information from this study will be used to produce a final draft the decision aid. Prospective evaluation of the decision aid would further assist in optimising the decision aid and understanding its utility in clinical practise.