Primary prevention of ovarian cancer: a patient decision aid for opportunistic salpingectomy.

Abstract Background The discovery of the Fallopian tube epithelium as origin of high grade serous ovarian cancer has brought a new option for ovarian cancer prevention. As the Fallopian tubes have no known function after completion of childbearing, they can be removed to reduce the life-time risk of ovarian cancer. Although the lifetime risk in the general population does not justify preventive surgery in itself, salpingectomy can be performed during abdominal surgery for other indications, also known as an opportunistic salpingectomy. The popularity of opportunistic salpingectomy is increasing globally, however substantial variation between gynecologists and hospitals in their advice on the opportunistic salpingectomy occurs due to remaining uncertainty of evidence. As a result, whether or not a woman is able to make her own decision depends on the hospital or gynecologist she visits. We aim to lower this practice variation by providing standardized and unbiased counseling material. Objective(s) To develop and test a patient decision aid for an opportunistic salpingectomy in women undergoing either pelvic gynecological surgery with the intention to retain the ovaries or opting for sterilization. Study Design We followed a systematic development process based on the International Patient Choice Aid Standard (IPDAS). Data were collected between June 2019 and June 2020, using both qualitative and quantitative methods. The development process which took place in collaboration with patients and healthcare professionals, was overseen by a multidisciplinary steering group, and was divided in four phases; 1. Assessment of decisional needs using individual telephone interviews and questionnaires; 2. Development of content and format based on decisional needs, current literature and guidelines; 3. Alpha-testing and first revision round; and 4. Alpha-testing and second revision round. Results An outline of the patient decision aid was developed based on decisional needs, current literature and guidelines. It became clear that the decision aid should consist of two separate paths: one with information specifically for salpingectomy in addition to abdominal surgery and one for salpingectomy as a sterilization method. Both paths contain information on the anatomy and function of ovaries and Fallopian tubes, the risk reduction of ovarian cancer and the potential benefits and risks of opportunistic salpingectomy. The sterilization path also contains information on the various sterilization methods and the risk of unwanted pregnancy. The patient decision aid was developed as an online tool that includes information chapters, a knowledge quiz, consideration statements, and a summary detailing patient’s preference and considerations. Adjustments were made following alpha-testing round one. The improved patient decision aid was subjected to usability tests (alpha-testing round two), in which it scored an ‘excellent’ in patient testing and a ‘good’ in tests with gynecologists. Furthermore, our patient decision aid met the requirements of 45 out of 49 applicable items from the International Patient Decision Aid Standards criteria. Conclusion In collaboration with patients and healthcare professionals, a patient decision aid was developed on opportunistic salpingectomy and salpingectomy as a sterilization method. Both patients and gynecologists thought it a usable aid which supports patients in making an informed decision whether to undergo an opportunistic salpingectomy, and supports the counseling process by gynecologists.