"I don't know what a nomogram is": A mixed methods approach to the creation of a patient decision aid for men with high-risk features post prostatectomy
Jesse D. Sammon, D.O., Christina R. Gentile, BS, Michael Kohut, Ph.D., Christopher Stockdale, MD, Moritz Hansen, MD, Paul Han, MD
Maine Medical Center, Portland, ME, USA.
BACKGROUND: Three large multi-institution RCTs have demonstrated that for men with extracapsular extension, seminal vesicle involvement, and/or positive surgical margins, after radical prostatectomy, adjuvant radiotherapy (ART) may have a favorable impact on biochemical and local recurrence rates. However there is conflicting evidence concerning the effect of ART on cancer specific and overall survival. Given limitations of existing data, and the risk of treatment related side effects, the decision to pursue ART is patient preference-sensitive.
METHODS: A multidisciplinary work-group (Urologists, Radiation Oncologists, Medical Oncologists, Physician Assistants, Nurse practitioners, Oncology nurses) created an evidence-based decision aid (DA), based on a review of available literature and guided by International Patient Decision Aid Society criteria, to inform patients of the risks, benefits, and uncertainties of ART vs. early salvage RT for men with high-risk features following RP. Alpha testing included readability, plain language assessment and 3 iterative waves of qualitative usability interviews with prostate cancer patients recruited from a large metropolitan Urology group practice (n=12). Three members of the study team conducted software-assisted coding and thematic analysis of transcribed interviews, focusing on participants’ reactions to the DA, points of confusion, and recommendations for improvement. Usability of the DA was measured using the NASA-TLX and system usability score.
RESULTS: Prostate cancer patients reported favorable perceptions of the value of the prototype DA, but also identified several areas for improvement, including confusing terms and jargon. Patient feedback was used to iteratively revise the DA to maximize its understandability and usability. Patients also provided valuable input on their informational and emotional needs in dealing with prostate cancer. Quantitative measures suggested that the prototype DA had an acceptable level of usability.
CONCLUSIONS:
A new decision aid for men with high-risk features following RP for PCa, iteratively designed with patient input, shows promising evidence of understandability and usability. Further research will assess the effectiveness of the DA in improving shared decision making for this subset of prostate cancer patients.
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