Introduction/Background In the light of the growing number of (intense) treatment options for advanced stage ovarian cancer (OC) patients, while survival is still poor, the patient association indicated an increased need for a tool to improve shared-decision-making (SDM) by patients and their clinicians. The Dutch working party on gynaecologic oncology initiated the development of an evidence based online decision aid (DA) to support SDM. The aim of this study was to develop the DA.
Methodology A four-stage development method was followed: 1: Identifying patients‘ (N=43) and professionals’ (N=22) needs by questionnaires and in-depth patient interviews (N=12). 2: Face-to-face meetings with a multidisciplinary team were organized including representatives of the patient association. 3: Development of the DA using International Patient Decision Aid Standards (IPDAS) and Dutch Guidelines. 4: Usability testing with OC patients and professionals.
Results Both patients and clinicians supported the need for reliable information that include all available treatment options in the Netherlands. Although the majority of patients were very satisfied about the process of information provision, 90% indicated that no choice in treatment options was offered. Based on study findings and discussions during the meetings, a consultation sheet and a DA were developed. The sheet, presented during first consultations, contains a summary of all treatment options, including intraperitoneal (IP)-chemotherapy and hyperthermic intraperitoneal chemotherapy (HIPEC), and a login code for the online DA. The online part, which can be used at home, consists of information about disease and treatment options, questions about quality of life and treatment preferences, and ends in a summary which patient and clinician can discuss during the next consultation.
Conclusion A DA was developed in cooperation with patients and professionals to support SDM for advanced stage OC patients and their clinicians. Acceptance was gained among all stakeholders involved. The DA is currently under assessment in a multicenter implementation trial.
Disclosure Ir. Regina The is the managing director of ZorgKeuzeLab B.V. Delft.
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