Evidence-based patient choice: a prostate cancer decision aid in plain language

Abstract

BackgroundDecision aids (DA) to assist patients in evaluating treatment options and sharing in decision making have proliferated in recent years. Most require high literacy and do not use plain language principles. We describe one of the first attempts to design a decision aid using principles from reading research and document design. The plain language DA prototype addressed treatment decisions for localized prostate cancer. Evaluation assessed impact on knowledge, decisions, and discussions with doctors in men newly diagnosed with prostate cancer.MethodsDocument development steps included preparing an evidence-based DA in standard medical parlance, iteratively translating it to emphasize shared decision making and plain language in three formats (booklet, Internet, and audio-tape). Scientific review of medical content was integrated with expert health literacy review of document structure and design. Formative evaluation methods included focus groups (n = 4) and survey of a new sample of men newly diagnosed with prostate cancer (n = 60), compared with historical controls (n = 184).ResultsA transparent description of the development process and design elements is reported. Formative evaluation among newly diagnosed prostate cancer patients found the DA to be clear and useful in reaching a decision. Newly diagnosed patients reported more discussions with doctors about treatment options, and showed increases in knowledge of side effects of radiation therapy.ConclusionThe plain language DA presenting medical evidence in text and numerical formats appears acceptable and useful in decision-making about localized prostate cancer treatment. Further testing should evaluate the impact of all three media on decisions made and quality of life in the survivorship period, especially among very low literacy men.

Patient Decision Aids for Prostate Cancer Treatment: A Systematic Review of the Literature

“…[30][31][32][33][34] Only 1 study reported data concerning the length of 38 In general, participants found DAs to be helpful and were satisfied with the content. Brink et al 41 and Holmes-Rovner et al 36 reported data concerning the clarity and usefulness of the DAs themselves. In the study by Brink et al, 79% of participants thought the amount of information presented was appropriate and 91% were satisfied with the presentation and narration 41 ; in the study by Holmes-Rovner et al, greater than 75% of the participants thought the length of the presentation and the amount of information presented were "about right," and the treatment descriptions were balanced.…”

“…Six DAs discussed "watchful waiting," surgical options, and radiation therapy (external beam radiation or brachytherapy). 33,[35][36][37]40,42 Four DAs also discussed hormonal or combination therapy. 33,37,42,43 One trial discussed surgery and radiation therapy only, 32 and 3 DAs described radiation therapy only.…”

“…The majority of the DAs were developed de novo; 2 trials used a DA developed by Holmes-Rovner et al 35,36 Kim et al used a DA produced by a pharmaceutical company. 37 Most DAs presented information in multiple formats, including written materials (8 trials) 30,31,[33][34][35][36][38][39][40] and multimedia presentations (8 trials), [35][36][37][38][40][41][42][43] and provided individualized information for patients based on their disease stage. Two trials tested interventions involving information exchange via in-person consultation with urologists and a multidisciplinary team.…”

“…[30][31][32][33][34][35][36][37][38][39][40][41][42][43] The DAs were delivered in 4 settings: hospitals (4 studies), physician's offices (1 study), patient education centers (4 studies), and nonmedical settings such as home or research office (4 studies). Participants were recruited from academic and community settings.…”

“…[35][36][37][38][39][40][41][42][43] Four trials referred patients to a patient education center to view the DAs. [38][39][40]43 Four studies incorporated the DA into the physician visit.…”