Karen Kelly-Blake

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

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.

Addressing health literacy in patient decision aids.

BackgroundEffective use of a patient decision aid (PtDA) can be affected by the user’s health literacy and the PtDA’s characteristics. Systematic reviews of the relevant literature can guide PtDA developers to attend to the health literacy needs of patients. The reviews reported here aimed to assess:1. a) the effects of health literacy / numeracy on selected decision-making outcomes, and b) the effects of interventions designed to mitigate the influence of lower health literacy on decision-making outcomes, and2. the extent to which existing PtDAs a) account for health literacy, and b) are tested in lower health literacy populations.MethodsWe reviewed literature for evidence relevant to these two aims. When high-quality systematic reviews existed, we summarized their evidence. When reviews were unavailable, we conducted our own systematic reviews.ResultsAim 1: In an existing systematic review of PtDA trials, lower health literacy was associated with lower patient health knowledge (14 of 16 eligible studies). Fourteen studies reported practical design strategies to improve knowledge for lower health literacy patients. In our own systematic review, no studies reported on values clarity per se, but in 2 lower health literacy was related to higher decisional uncertainty and regret. Lower health literacy was associated with less desire for involvement in 3 studies, less question-asking in 2, and less patient-centered communication in 4 studies; its effects on other measures of patient involvement were mixed. Only one study assessed the effects of a health literacy intervention on outcomes; it showed that using video to improve the salience of health states reduced decisional uncertainty. Aim 2: In our review of 97 trials, only 3 PtDAs overtly addressed the needs of lower health literacy users. In 90% of trials, user health literacy and readability of the PtDA were not reported. However, increases in knowledge and informed choice were reported in those studies in which health literacy needs were addressed.ConclusionLower health literacy affects key decision-making outcomes, but few existing PtDAs have addressed the needs of lower health literacy users. The specific effects of PtDAs designed to mitigate the influence of low health literacy are unknown. More attention to the needs of patients with lower health literacy is indicated, to ensure that PtDAs are appropriate for lower as well as higher health literacy patients.

Decision Aids for Benign Prostatic Hyperplasia: Applicability across Race and Education

Background/Method. Decision aids have not been widely tested in diverse audiences. The authors conducted interviews in a 2 2 race by education design with participants who were 50 years old (n = 188). The decision aid was a benign prostatic hyperplasia videotape. Results. There was an increase in knowledge equal in all groups, with baseline knowledge higher in whites. The decision stage increased in all groups and was equivalent in the marginal-illiterate subgroup (n = 0.15). Conclusion. Contrary to expectations, results show no difference by race or college education in knowledge gain or increase in reported readiness to decide. The video appeared to produce change across race and education. The end decision stage was high, especially in less educated men. Results suggest that decision aids may be effective without tailoring, as suggested previously to enhance health communication in diverse audiences. Research should test findings in representative samples and in clinical encounters and identify types of knowledge absorbed from decision aids and whether the shift to decision reflects data/ knowledge or shared decision-making message.

Men's Theories About Benign Prostatic Hyperplasia and Prostate Cancer Following a Benign Prostatic Hyperplasia Decision Aid

AbstractOBJECTIVE: To use qualitative methods to explore audiotape evidence of unanticipated confusion between benign prostatic hyperplasia (BPH) and prostate cancer in using a videotape BPH treatment decision aid (DA). DESIGN: Qualitative analysis of semi-structured interviews and surveys originally collected to study men’s interpretation of a DA. SETTING AND PARTICIPANTS: Community sample of college and noncollege educated African American and white men (age ≥50; n=188). MEASURES: Transcript analysis identified themes in men’s comments about BPH and cancer. Surveys measured BPH general and prostate cancer-specific knowledge, literacy (Short Test of Functional Health Literacy in Adults), BPH symptoms, and demographics. RESULTS: In transcript analysis, 18/188 men spontaneously talked about BPH and cancer as being related to each other, despite explicit statements to the contrary in the video. Survey data suggest that up to 126/188 men (67%) persisted in misconceptions even after viewing the DA video. Three themes were identified in the transcripts: (1) BPH and cancer are equated, (2) BPH surgery is for the purpose of removing cancer, and (3) BPH leads to cancer. CONCLUSIONS: Overall knowledge increases with DA use may mask incorrect theories of disease process. Further research should identify decision support designs and clinical counseling strategies to address persistence of beliefs contrary to new information presented in evidence-based DAs.

Shared Decision Making Guidance Reminders in Practice (SDM-GRIP)

OBJECTIVE Develop a system of practice tools and procedures to prompt shared decision making in primary care. SDM-GRIP (Shared Decision Making Guidance Reminders in Practice) was developed for suspected stable coronary artery disease (CAD), prior to the percutaneous coronary intervention (PCI) decision. METHODS Program evaluation of SDM-GRIP components: Grand Rounds, provider training (communication skills and clinical evidence), decision aid (DA), patient group visit, encounter decision guide (EDG), SDM provider visit. RESULTS Participation-Physician training=73% (21/29); patient group visits=25% of patients with diagnosis of CAD contacted (43/168). SDM visits=16% (27/168). Among SDM visit pairs, 82% of responding providers reported using the EDG in SDM encounters. Patients valued the SDM-GRIP program, and wanted to discuss comparative effectiveness information with a cardiologist. SDM visits were routinely reimbursed. CONCLUSION Program elements were well received and logistically feasible. However, recruitment to an extra educational group visit was low. Future implementation will move SDM-GRIP to the point of routine ordering of non-emergent stress tests to retain pre-decision timing of PCI and to improve coordination of care, with SDM tools available across primary care and cardiology. PRACTICE IMPLICATIONS Guidance prompts and provider training appear feasible. Implementation at stress testing requires further investigation.

Nurse-led group visits support shared decision making in stable coronary artery disease.

Objective:The aim of this study was to develop and evaluate a nurse-led educational group visit (GV) as part of a multifaceted intervention, Shared Decision Making (SDM) Guidance Reminders in Practice, to prompt SDM in primary care about angiography in stable coronary artery disease. Methods:A process evaluation designed to test the feasibility of a nurse-led educational GV was conducted. The evaluation used retrospective pre-post surveys. Results:Nurse-led GV was well received and logistically feasible. Patients gained knowledge of options and confidence in doing SDM with providers. However, recruitment at the point of the educational GV was below the threshold of 12 patients per group that would support sustaining this approach in fee-for-service clinical practice. Conclusions:Nurse-led GV can produce gains in knowledge and confidence required for patients to participate in SDM. However, the constraints of time and personnel required to bring groups of patients together require new approaches. Future development will focus on adapting the content of the GV for SDM as an electronic teaching module associated with integrated personal health records.

Men's interpretations of graphical information in a videotape decision aid.

Objective  To examine mens interpretations of graphical information types viewed in a high‐quality, previously tested videotape decision aid (DA).

Rationales for expanding minority physician representation in the workforce: a scoping review

The purpose of this study was to conduct a scoping review of the literature and to categorically map a 15‐year trajectory of US undergraduate medical education rationales for and approaches to expanding under‐represented minority (URM) physician representation in the medical workforce. Further aims were to comparatively examine related justifications and to consider international implications.

Refining a brief decision aid in stable CAD: cognitive interviews

BackgroundWe describe the results of cognitive interviews to refine the “Making Choices©” Decision Aid (DA) for shared decision-making (SDM) about stress testing in patients with stable coronary artery disease (CAD).MethodsWe conducted a systematic development process to design a DA consistent with International Patient Decision Aid Standards (IPDAS) focused on Alpha testing criteria. Cognitive interviews were conducted with ten stable CAD patients using the “think aloud” interview technique to assess the clarity, usefulness, and design of each page of the DA.ResultsParticipants identified three main messages: 1) patients have multiple options based on stress tests and they should be discussed with a physician, 2) take care of yourself, 3) the stress test is the gold standard for determining the severity of your heart disease. Revisions corrected the inaccurate assumption of item number three.ConclusionsCognitive interviews proved critical for engaging patients in the development process and highlighted the necessity of clear message development and use of design principles that make decision materials easy to read and easy to use. Cognitive interviews appear to contribute critical information from the patient perspective to the overall systematic development process for designing decision aids.

Correlates of Patient Intent and Preference on Colorectal Cancer Screening

INTRODUCTION Information is limited on patient characteristics that influence their preference among screening options and intent to be screened for colorectal cancer (CRC). A mechanistic pathway to intent and preference was examined through a formal mediation analysis. METHODS From 2012 to 2014, a total of 570 adults aged 50-75 years were recruited from 15 primary care practices in Metro Detroit for a trial on decision aids for CRC screening. Confirmatory factor, regression, and mediation analyses were performed in 2015-2016 on baseline cross-sectional data. Main outcomes were patient intent and preference. Perceived risk and self-efficacy were secondary outcomes. Covariates included demographic information, health status, previous CRC screening experience, patient attitudes, and knowledge. RESULTS Mean age was 57.7 years, 56.1% were women, and 55.1% white and 36.6% black. Women had 32% and 41% lower odds than men of perceiving CRC to be high/moderate risk (OR=0.68, 95% CI=0.47, 0.97, p=0.03) and having high self-efficacy (OR=0.59, 95% CI=0.42, 0.85, p=0.006), respectively. Whites had 63% and 47% lower odds than blacks of having high self-efficacy (OR=0.37, 95% CI=0.25, 0.57, p<0.001) and intent to undergo CRC screening (OR=0.53, 95% CI=0.34, 0.84, p=0.007), respectively. Younger age, higher knowledge, lower level of test worries, and medium/high versus low self-efficacy increased the odds of intent of being screened. Self-efficacy, but not perceived risk, significantly mediated the association between race, attitude, and test worries and patient screening intent. CONCLUSIONS Self-efficacy mediated the association between race, attitude, and test worries and patient intent.