Development of a decision aid to support ovarian cancer patient decide on CA125 biomarker monitoring

Anette Stolberg Kargo, Angela Coulter, Pernille Tine Jensen, Karina Dahl Steffensen

Research output: Contribution to conference without publisher/journalConference abstract for conferenceResearchpeer-review


Each year in Denmark 450 women are diagnosed with ovarian cancer (OC). The majorities are diagnosed with advanced disease, and 70-80% will experience relapse with only limited curative potential. Evidence has shown that early initiation of recurrence treatment based alone on rising CA125 alone does not improve survival. Monitoring CA125 is a validated method for detecting relapse, and increasing CA125 can be detected months before symptoms appears and recurrence is visible on imaging. Danish Health Authorities recommend that personal preferences should be taken into account prior to initiating CA125 monitoring through the use of a patient decision aid (ptDA).
To develop and validate a ptDA on a preference sensitive decision on CA125 monitoring during follow-up.
In close collaboration with clinicians, designers, patients, and the Danish Cancer Society a draft ptDA was created. The ptDA was discussed with a focus group of 7 former OC patients and the ptDA was modified following their input. Subsequently, the ptDA was alpha tested, using a structured interview guide. The third ptDA development step is beta testing on real time patients including Decision Conflict Scale (DCS) before and after patients have been represented for the ptDA.
Preliminary data from the first 9 patients included in the beta test showed a decline in all DCS subscores and in total DCS score after patients have been presented for the in-consult ptDA. The total DCS score declined from 22.9 before the consultation to 13.0 after the consultation (p = 0.340). The uncertainty subscore declined from 18.5 to 5.6 (p = 0.055) and the informed subscore declined from 26.9 to 9.3 (p = 0.103). Moreover, the clarity and support subscores also decreased; from 28.8 to 17.6 (p = 0.391) and from 18.5 to 4.6 (p = 0.438) respectively.
None of the DCS scores decreased significantly, probably due to the yet low number of recruited patients. Though, the preliminary data from the beta test showed that the ptDA was helpful and the data indicate that the use of a ptDA leads to a better informed decision and that the ptDA supports the decision making process.
Original languageEnglish
Publication date10. Jul 2019
Publication statusPublished - 10. Jul 2019
Event10th International Shared Decision Making Conference (ISDM 2019) - Laval University, Quebec, Denmark
Duration: 7. Jul 201910. Jul 2019


Conference10th International Shared Decision Making Conference (ISDM 2019)
LocationLaval University
Internet address

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