Communicating prognosis to women with early breast cancer - overview of prediction tools and the development and pilot testing of a decision aid

• Published in: BMC health services research Vol. 19; no. 1; p. 171
• Main Authors: Mühlbauer, Viktoria, Berger-Höger, Birte, Albrecht, Martina, Mühlhauser, Ingrid, Steckelberg, Anke
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 15.03.2019; BioMed Central; BMC
• Subjects: Age; Biomarkers; Breast cancer; Breast neoplasms; Brochures; Cancer therapies; Cancer treatment; Cardiovascular disease; Chemotherapy; Clinical decision making; Collaboration; Comorbidity; Decision making; Decision support systems; Decision support techniques; Displays (Marketing); Drug dosages; Endocrine therapy; Evidence-based medicine; Focus groups; Gene expression; Health aspects; Health services; Hormones; Management; Medical prognosis; Metastasis; Methods; Mortality; Nurses; Oncology; Outcome and process assessment (Medical care); Patient education; Patients; Physician-patient relations; Prediction tool; Prognosis; Risk communication; Self help; Substance abuse treatment; Systematic review; Tumors; Women; Womens health; Decision-making; Decision support techniques; Breast neoplasms; Prognosis; Risk communication; Prediction tool
• ISSN: 1472-6963; 1472-6963
• DOI: 10.1186/s12913-019-3988-2

Shared decision-making in oncology requires information on individual prognosis. This comprises cancer prognosis as well as competing risks of dying due to age and comorbidities. Decision aids usually do not provide such information on competing risks. We conducted an overview on clinical prediction tools for early breast cancer and developed and pilot-tested a decision aid (DA) addressing individual prognosis using additional chemotherapy in early, hormone receptor-positive breast cancer as an example. Systematic literature search on clinical prediction tools for the effects of drug treatment on survival of breast cancer. The DA was developed following criteria for evidence-based patient information and International Patient Decision Aids Standards. We included data on the influence of age and comorbidities on overall prognosis. The DA was pilot-tested in focus groups. Comprehension was additionally evaluated through an online survey with women in breast cancer self-help groups. We identified three prediction tools: Adjuvant!Online, PREDICT and CancerMath. All tools consider age and tumor characteristics. Adjuvant!Online considers comorbidities, CancerMath displays age-dependent non-cancer mortality. Harm due to therapy is not reported. Twenty women participated in focus groups piloting the DA until data saturation was achieved. A total of 102 women consented to participate in the online survey, of which 86 completed the survey. The rate of correct responses was 90.5% and ranged between 84 and 95% for individual questions. None of the clinical prediction tools fulfilled the requirements to provide women with all the necessary information for informed decision-making. Information on individual prognosis was well understood and can be included in patient decision aids.