Development of a patient decision aid to support ovarian cancer patients choice or decline of CA125 monitoring.

Anette Stolberg Kargo, Angela Coulter (Member of author group), Pernille Tine Jensen (Member of author group), Karina Dahl Steffensen (Member of author group)

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


Each year in Denmark 400 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. CA125 is a biomarker than can be
detected in serum, and CA125 relapse can often be detected months before a relapse is visible by imaging. Early
initiation of treatment for relapse based on increasing levels of CA125 alone does not improve survival. Danish Health
Authorities recommend that personal preferences should be taken into account prior to initiating CA125 monitoring.
Patient decision aids (DA) can facilitate shared decision making and help patients (pt) better understand the pros and
cons of a specific intervention and furthermore, engage pt in the difficult decision whether to have CA125
measurements performed during their follow‐up (FU). The aim is to develop and validate a DA to help pt decide on
CA125 monitoring during FU. Here results from the alpha test will be presented.
Development of the DA was conducted in close collaboration with clinicians, designers, OC pt, and representatives from
patient organization, KIU. Step 1: A draft DA was produced and discussed with a focus group of former OC pt. The DA
was amended following their input. Step 2: DA alpha test with OC pt using a structured interview guide. Step 3: The DA
was slightly altered, and is now in real‐time beta testing.
The alpha test showed (N=14) that pt had a good understanding of the information provided in the DA. In total, 10
indicated that the DA helped clarifying what was important and helped asking questions to their doctor. 12 agreed that
the DA prepared them to make a better decision and helped them reflecting on their concerns regarding CA125.
The DA was found useful in decision making regarding CA125 monitoring. The majority indicated that the DA was
helpful in clarifying their concerns and would be helpful in making a preference sensitive decision.
Original languageEnglish
Publication dateAug 2018
Publication statusPublished - Aug 2018
EventDanske Kræftforskningsdage - Odeon, Odense, Denmark
Duration: 30. Aug 201831. Aug 2018


ConferenceDanske Kræftforskningsdage
Internet address


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