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IDECIDE breast surgery patient decision aid: Development and testing of a quality of life-integrated decision support
Monica Adams1,2, Jakob A Durden3, Sarah E Leslie4
1Department of Psychological, Health, and Learning Sciences, College of Education, University of Houston, Houston, TX, USA. mnadams@cougarnet.uh.edu.
Purpose:
Surgery is the primary treatment for early-stage breast cancer, with breast-conserving surgery and mastectomy offering similar survival outcomes. Shared decision-making (SDM) and patient decision aids (PDAs) can help patients weigh options, but many PDAs lack long-term quality of life (QoL) data. The IDECIDE Breast Surgery PDA addresses this gap by embedding real-world, institution-specific patient-reported QoL data directly into the PDA, allowing patients to consider survivorship outcomes while actively deliberating between surgical options rather than evaluating QoL only after a decision has been made.
Methods:
Developed using the Ottawa Decision Support Framework and International Patient Decision Aids Standards (IPDAS), the PDA underwent iterative testing for understandability, actionability, and acceptability. Nine patients and six clinicians assessed the PDA via surveys and semi-structured interviews. Thematic rapid coding analysis was applied to interview transcripts.
Results:
Patients rated the PDA's understandability at 98.7% and actionability at 92.0%, with 100% finding the length and amount of information appropriate. Clinicians rated understandability at 100% and actionability at 95.2%. Both groups found the PDA balanced in presenting treatment options, with clinicians scoring 42.5/46.0 on IPDAS criteria. Patient interviews highlighted clarity, visual aids, and inclusion of QoL data, with suggestions for additional content and improved formatting. Clinicians recommended addressing contralateral breast surgery and endocrine therapy concerns.
Conclusions:
The IDECIDE PDA effectively integrates QoL data and supports SDM, with high ratings from both patients and clinicians. Future work will implement suggested revisions and pilot the PDA with newly diagnosed breast cancer patients.