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Original research
Development of a decision aid for primary treatment of patients with advanced-stage ovarian cancer
  1. Judith E den Ouden1,
  2. Regina The2,
  3. Britt J Myren1,
  4. Dorry Boll3,
  5. Willemien J van Driel4,
  6. Roy I Lalisang5,6,
  7. Roy FPM Kruitwagen6,7 and
  8. Anne M van Altena1
  1. 1Obstetrics and Gynecology, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, Netherlands
  2. 2Development and Implementation of Decision Aids, ZorgKeuzeLab, Delft, Netherlands
  3. 3Obstetrics and Gynecology, Catharina Hospital, Eindhoven, Netherlands
  4. 4Center for Gynecological Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, Netherlands
  5. 5Internal Medicine, Division Medical Oncology, Maastricht University Medical Center, Maastricht, Netherlands
  6. 6GROW, School for Oncology and Developmental Biology, Maastricht, Netherlands
  7. 7Obstetrics and Gynecology, Maastricht University Medical Center, Maastricht, Netherlands
  1. Correspondence to Judith E den Ouden, Obstetrics and Gynecology, Radboudumc, 6525 GA Nijmegen, Netherlands; judith.e.denouden{at}radboudumc.nl

Abstract

Introduction Despite renewed treatment options for advanced epithelial ovarian cancer, survival remains poor. The Patient Association and the Gynecological Oncology Working Party in the Netherlands have identified a need for a tool to improve shared decision-making. The aim of this study was to develop an evidence-based online decision aid for patients with advanced epithelial ovarian cancer and their medical team.

Methods First, we identified the patients’ and clinicians’ needs using surveys and in-depth interviews. Second, we conducted multidisciplinary face-to-face meetings with representatives from all stakeholders (clinicians and patient representatives) to determine the content of the decision aid. Third, we developed the decision aid using standardized criteria and national guidelines. Finally, we tested the usability of the tool with patients and clinicians who participated in the needs assessment.

Results Patients and clinicians indicated the need for more sources of reliable information that include all treatment options available in the Netherlands. Although most interviewees were satisfied with the level of information available at the time of their own treatment, the majority (90%) of the patients stated that no choice of treatment was offered. We developed a consultation sheet and an online decision aid based on patient interviews and team discussions. The sheet contains a summary of all treatment options and login codes for the decision aid; it will be offered to patients at their first consultation. The decision aid can be used at home and includes information about epithelial ovarian cancer and all available treatment options and questions about quality of life and treatment preferences, delivering a personalized summary for discussion during the following consultation about the primary treatment choices.

Discussion In cooperation with patients and clinicians, we developed a decision aid for advanced-stage epithelial ovarian cancer patients and their medical team to support shared decision-making, based on a confirmed need for more extensive information sources. The decision aid is currently under assessment in a multicenter implementation trial.

  • ovarian cancer

https://doi.org/10.1136/ijgc-2019-001095

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    Footnotes

    • Contributors JO, RT, RK, and AA made substantial contributions to the study conceptualization. JO and RT contributed to data acquisition, with help from DB, WD, RL, RK, and AA. JO, RT, and BM performed the data analysis, and all the other authors contributed to data interpretation. RT, RK, and AA contributed to funding acquisition. JO prepared the manuscript, and all the authors reviewed and edited the manuscript.

    • Funding This research received a grant from Stichting Kwaliteitsgelden Medisch Specialisten (SKMS) (Quality Foundation of the Dutch Federation of Medical Specialists).

    • Competing interests Regina The reports grants from Stichting Kwaliteitsgelden Medisch Specialisten (SKMS) (Quality Foundation of the Dutch Federation of Medical Specialists) during the conduct of the study; other salary from ZorgKeuzeLab as CEO, outside the submitted work; and a shared copyright of the Decision Aid (DA) together with the Dutch Association for Obstetrics and Gynecology. No licenses have been issued yet.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available upon reasonable request. Data are available upon reasonable request to the corresponding author.