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OBJECTIVE: Analyze the role of collaboration in the International Shared Decision Making organization (ISDM). METHODS: Case study of the seven year history of ISDM as a professional network. RESULTS: The International Shared Decision Making meeting Conference (ISDM) has held four biennial meetings since its inception in 2001. It is a freestanding professional meeting, with no permanent institutional support and no formal governance structure. In both its history and its prospects, collaboration among attendees has been pivotal to its growth. It both attracts and holds its 'members' through the strength of the relationships formed during and between meetings. Exchanges in ISDM are informational, collegial, and indirectly economic. CONCLUSION: ISDM's future rests on keeping all three functions healthy. It must maintain a focus on putting the shared decision making work first through becoming a 'worknet'. Technologies that promote shared decision making can then be assembled and developed that support transformation of health care. PRACTICE IMPLICATIONS: Innovative professional organizations need to develop their work through deliberate development of networking techniques to move innovation into practice. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To describe the extent to which patient decision aids (PtDAs) meet effectiveness standards of the International Patient Decision Aids Collaboration (IPDAS). Data sources. Five electronic databases (to July 2006) and personal contacts (to December 2006). RESULTS: Among 55 randomized controlled trials, 38 (69%) used at least 1 measure that mapped onto an IPDAS effectiveness criterion. MEASURES: of decision quality were knowledge scores (27 trials), accurate risk perceptions (12 trials), and value congruence with the chosen option (3 trials). PtDAs improved knowledge scores relative to usual care (weighted mean difference [WMD] = 15.2%, 95% confidence interval [CI] = 11.7 to 18.7); detailed PtDAs were somewhat more effective than simpler PtDAs (WMD = 4.6%, 95% CI = 3.0 to 6.2). PtDAs with probabilities improved accurate risk perceptions relative to those without probabilities (relative risk = 1.6, 95% CI = 1.4 to 1.9). Relative to simpler PtDAs, detailed PtDAs improved value congruence with the chosen option. Only 2 of 6 IPDAS decision process criteria were measured: feeling informed (15 trials) and feeling clear about values (13 trials). PtDAs improved these process measures relative to usual care (feeling uninformed WMD = -8.4, 95% CI = -11.9 to -4.8; unclear values WMD = -6.3, 95% CI = -10.0 to -2.7). There was no difference in process measures when detailed and simple PtDAs were compared. CONCLUSIONS: PtDAs improve decision quality and the decision process's measures of feeling informed and clear about values; however, the size of the effect varies across studies. Several IPDAS decision process measures have not been used. Future trials need to use a minimum data set of IPDAS evaluation measures. The degree of detail PtDAs require for positive effects on IPDAS criteria should be explored. [ABSTRACT FROM AUTHOR]

Objectives: To examine the types and influences of health behavior goals self-selected by post hospitalized cardiac patients. Methods: Subjects participated in a trial assessing the effectiveness of a health behavior change program. Results: Nearly 95% of smokers and 89.7% of patients with elevated weights selected a smoking and/or dietary modification goal, respectively. Only 43.8% of physical activity goal patients started a rehabilitation program. Although no consistent relationships were found between patient characteristics and type of goal(s) selected, significant improvements in readiness to change levels occurred. Conclusions: Many patients can make health behavior progress consistent with behaviors needing improvements by clinical criteria. [ABSTRACT FROM AUTHOR]

OBJECTIVE: As part of a study of men's responses to a videotape decision aid [Rovner DR, Wills CE, Bonham V, Williams G, Lillie J, Kelly-Blake K, Williams MV, Holmes-Rovner M. Decision aids for benign prostatic hyperplasia: applicability across race and education. Med Decis Making 2004;24:359-66], preferences for BPH treatment options were assessed. METHODS: One hundred and sixty men stratified by race and education completed a semi-structured interview that included assessments of treatment preferences. RESULTS: Most men initially and ultimately favored watchful waiting over other options, and 56.6% never changed their preference rank orders while viewing the videotape. BPH severity in context of treatment risk avoidance, efficacy, and expert opinion factors were frequently cited reasons for preference orders. Lesser education was associated with higher likelihood of changing preferences (r = -.30, p < .001), and percent increase in BPH knowledge pre- to post-videotape was weakly associated with fewer non-dominant preference shifts (r = -.19, p < .05). CONCLUSION: Conservatism regarding BPH treatment is moderated by context-specific factors, including new information. PRACTICE IMPLICATION: Counseling in a provider-patient partnership model should address both sources of variance in men's treatment preferences. [ABSTRACT FROM AUTHOR]

BACKGROUND/METHOD: Decision aids have not been widely tested in diverse audiences. The authors conducted interviews in a 2 x 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. [ABSTRACT FROM AUTHOR]

The objective of this project was to analyze newspaper coverage of the January 2000 meta-analysis by Gotzsche and Olsen, "Is screening for breast cancer with mammography justified?" [Lancet 355 (2000) 129]. A content analysis was performed on a comprehensive set of newspaper clippings from the UK during the 2 weeks following publication of the Lancet article. The original authors were most quoted in Wave 1 (the first weekend); the screening programme was most quoted in Wave 2 (week 2). Screening programme description, and the "quality" of the Lancet article dominated Wave 1; patient testimonials increased in Wave 2. Newspaper articles were structured as debates between experts and advocates, thereby enhancing polarisation of opinion. We suggest this is counter-productive to evidence-based patient choice and public involvement in decision-making. Medical journals' and charities' press releases that begin to include discussion of uncertainty inherent in medical technologies can contribute to evidence-based public deliberation. [ABSTRACT FROM AUTHOR]

How does the way that information is presented potentially influence patients' consent for health treatments, in a shared decision making process? The goal of this paper is to present an overview of selected recent literature concerning patient health information presentation/use for treatment decision making. Recent work with patient populations has begun to extend early cognitive psychological work showing systematic biases in thinking. Key research findings are organized by type of format (probability, graphic, and qualitative/quantitative dimensions). The applied literature on this topic is amenable to only limited integration in regard to key findings, and relatively few novel approaches to improving information comprehension have been described in the health literature. Promising approaches being proposed, developed, and tested are described, such as enhanced-access computerized patient choice modules, "debiasing" techniques, and tailoring of information. Additional theoretical and practical issues are discussed, as well as selected policy implications of current knowledge. [ABSTRACT FROM AUTHOR]

Objective: To assess the influence of race and gender influence on the use of invasive procedures in patients with acute myocardial infarction (AMI) in community hospitals.Design: Prospective, observational.Setting: Five mid-Michigan community hospitals.Patients: All patients (838) identified with AMI between January 1994 and April 1995 in 1 of these hospitals.Measurements and Main Results: After adjusting for age, hospital of admission, insurance type, severity of AMI, and comorbidity, using white men as the reference group, the rate of being offered cardiac catheterization (CC) was 0.88 (95% confidence interval [95% CI], 0.60 to 1.29) for white women; 0.79 (95% CI, 0.41 to 1.50) for black men; and 1.14 (95% CI, 0.53 to 2.45)for black women. Among patients who underwent CC, after also adjusting for coronary artery anatomy, the rate of being offered angioplasty, using white men as the reference group, was 1.22 (95% CI, 0.75 to 1.98) for white women; 0.61 (5% CI, 0.29 to 1.28, P =.192) for black men; and 0.40 (95% CI, 0.14 to 1.13) for black women The adjusted rate of being offered bypass surgery was 0.47 (95% CI, 0.24 to 0.89) for white women; 0.36 (95% CI, 0.12 to 1.06) for black men; and 0.37 (95% CI, 0.11 to 1.28)for black women.Conclusions: Our study shows that white women are less likely than white men to be offered bypass surgery after AMI. Although black men and women with AMI are less likely than white men to be offered percutaneous transluminal coronary angioplasty or coronary artery bypass grafting in both unadjusted and adjusted analyses, these findings did not reach statistical significance. Our study is limited in power due to the small number of blacks in the sample. [ABSTRACT FROM AUTHOR]

This study describes the perceptions and practices related to menopause and hormone replacement therapy (HRT) elicited by semistructured interview and questionnaire with 55 African-American women in focus groups. Major findings were as follows: (a) Menopause was perceived as a natural transition related to aging; (b) psychological symptoms were viewed more negatively than vasomotor symptoms; (c) self care and help-seeking practices were identified; (d) HRT was perceived negatively primarily due to fear of cancer; and (e) books and other women were main sources of information regarding menopause. The implications of these findings for health assessment, teaching, dissemination of information, and decision making are discussed. [ABSTRACT FROM AUTHOR]

Abstract Background The search for a reliable, valid and cost-effective comorbidity risk adjustment method for outcomes research continues to be a challenge. The most widely used tool, the Charlson Comorbidity Index (CCI) is limited due to frequent missing data in medical records and administrative data. Patient self-report data has the potential to be more complete but has not been widely used. The purpose of this study was to evaluate the performance of the Self-Administered Comorbidity Questionnaire (SCQ) to predict functional capacity, quality of life (QOL) health outcomes compared to CCI medical records data. Method An SCQ-score was generated from patient interview, and the CCI score was generated by medical record review for 525 patients hospitalized for Acute Coronary Syndrome (ACS) at baseline, three months and eight months post-discharge. Linear regression models assessed the extent to which there were differences in the ability of comorbidity measures to predict functional capacity (Activity Status Index [ASI] scores) and quality of life (EuroQOL 5D [EQ5D] scores). Results The CCI (R2 = 0.245; p = 0.132) did not predict quality of life scores while the SCQ self-report method (R2 = 0.265; p < 0.0005) predicted the EQ5D scores. However, the CCI was almost as good as the SCQ for predicting the ASI scores at three and six months and performed slightly better in predicting ASI at eight-month follow up (R2 = 0.370; p < 0.0005 vs. R2 = 0.358; p < 0.0005) respectively. Only age, gender, family income and Center for Epidemiologic Studies-Depression (CESD) scores showed significant association with both measures in predicting QOL and functional capacity. Conclusions Although our model R-squares were fairly low, these results show that the self-report SCQ index is a good alternative method to predict QOL health outcomes when compared to a CCI medical record score. Both measures predicted physical functioning similarly. This suggests that patient self-reported comorbidity data can be used for predicting physical functional capacity and QOL and can serve as a reliable risk adjustment measure. Self-report comorbidity data may provide a cost-effective alternative method for risk adjustment in clinical research, health policy and organizational improvement analyses. Trial registration Clinical Trials.gov NCT00416026

Abstract Background Comorbidity is an important adjustment measure in research focusing on outcomes such as health status and mortality. One recurrent methodological issue concerns the concordance of comorbidity data obtained from different reporting sources. The purpose of these prospectively planned analyses was to examine the concordance of comorbidity data obtained from patient self-report survey interviews and hospital medical record documentation. Methods Comorbidity data were obtained using survey interviews and medical record entries from 525 hospitalized Acute Coronary Syndrome patients. Frequencies and descriptive statistics of individual and composite comorbidity data from both sources were completed. Individual item agreement was evaluated with simple and weighted kappas, Spearman Rho coefficients for composite scores. Results On average, patients reported more comorbidities during their patient survey interviews (mean = 1.78, SD = 1.99) than providers had documented in medical records (mean = 1.27, SD = 1.43). Higher proportions of positive responses were obtained from self-reports compared to medical records for all conditions except congestive heart failure and renal disease. Older age and higher depressive symptom levels were significantly associated with poorer levels of data concordance. Conclusion These results demonstrate that survey comorbidity data from ACS patients may not be entirely concordat with medical record documentation. In the absence of a gold standard, it is possible that hospital records did not include all pre-admission comorbidities and these patient survey interview methods may need to be refined. Self-report methods to facilitate some patients' complete recall of comorbid conditions may need to be refined by health services researchers. Trial Registration ClinicalTrials.gov NCT00416026.

Abstract Background Publication of results from the Women's Health Initiative study in July 2002 was a landmark event in biomedical science related to postmenopausal women. The purpose of this study was to describe the impact of new hormone therapy recommendations on patients' attitudes and decision-making in a primary care practice. Methods A questionnaire including structured and open-ended questions was administered in a family practice office waiting room from August through October 2003. Rationale for taking or not taking hormone therapy was specifically sought. Women 50–70 years old attending for office visits were invited to participate. Data were analyzed qualitatively and with descriptive statistics. Chart review provided medication use rates for the entire practice cohort of which the sample was a subset. Results Respondents (n = 127) were predominantly white and well educated, and were taking hormone therapy at a higher rate (38%) than the overall rate (26%) for women of the same age range in this practice. Belief patterns about hormone therapy were, in order of frequency, 'use is risky', 'vindication or prior beliefs', 'benefit to me outweighs risk', and 'unaware of new recommendations'. Twenty-eight out of 78 women continued hormones use after July 2002. Of 50 women who initially stopped hormone therapy after July 2002, 12 resumed use. Women who had stopped hormone therapy were a highly symptomatic group. Responses with emotional overtones such as worry, confusion, anger, and grief were common. Conclusion Strategies for decision support about hormone therapy should explicitly take into account women's preferences about symptom relief and the trade-offs among relevant risks. Some women may need emotional support during transitions in hormone therapy use.

Abstract Background Adherence to clinical practice guidelines for the treatment of specific illnesses may result in unexpected outcomes, given that multiple therapies must often be given to patients with diverse medical conditions. Yet, few studies have presented empirical evidence that quality improvement (QI) programs both change practice by improving adherence to guidelines and improve patient outcomes under the conditions of actual practice. Thus, we focus on patient survival, following hospitalization for acute coronary syndrome in three successive patient cohorts from the same community hospitals, with a quality improvement intervention occurring between cohorts two and three. Methods This study is a comparison of three historical cohorts of Acute Coronary Syndrome (ACS) patients in the same five community hospitals in 1994–5, 1997, 2002–3. A quality improvement project, the Guidelines Applied to Practice (GAP), was implemented in these hospitals in 2001. Study participants were recruited from community hospitals located in two Michigan communities during three separate time periods. The cohorts comprise (1) patients enrolled between December 1993 and April 1995 (N = 814), (2) patients enrolled between February 1997 and September 1997 (N = 452), and (3) patients enrolled between January 14, 2002 and April 13, 2003 (N = 710). Mortality data were obtained from Michigan's Bureau of Vital Statistics for all three patient cohorts. Predictor variables, obtained from medical record reviews, included demographic information, indicators of disease severity (ejection fraction), co-morbid conditions, hospital treatment information concerning most invasive procedures and the use of ace-inhibitors, beta-blockers and aspirin in the hospital and as discharge recommendations. Results Adjusted in-hospital mortality showed a marked improvement with a HR = 0.16 (p < 0.001) comparing 2003 patients in the same hospitals to those 10 years earlier. Large gains in the in-hospital mortality were maintained based on 1-year mortality rates after hospital discharge. Conclusion Changes in practice patterns that follow recommended guidelines can significantly improve care for ACS patients. In-hospital mortality gains were maintained in the year following discharge.

Abstract Background Decision 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. Methods Document 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). Results A 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. Conclusion The 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.

Abstract Background Prospective users of preventive therapies often must evaluate complex information about therapeutic risks and benefits. The purpose of this study was to evaluate the effect of relative and absolute risk information on patient decision-making in scenarios typical of health information for patients. Methods Factorial experiments within a telephone survey of the Michigan adult, non-institutionalized, English-speaking population. Average interview lasted 23 minutes. Subjects and sample design: 952 randomly selected adults within a random-digit dial sample of Michigan households. Completion rate was 54.3%. Results When presented hypothetical information regarding additional risks of breast cancer from a medication to prevent a bone disease, respondents reduced their willingness to recommend a female friend take the medication compared to the baseline rate (66.8% = yes). The decrease was significantly greater with relative risk information. Additional benefit information regarding preventing heart disease from the medication increased willingness to recommend the medication to a female friend relative to the baseline scenario, but did not differ between absolute and relative risk formats. When information about both increased risk of breast cancer and reduced risk of heart disease were provided, typical respondents appeared to make rational decisions consistent with Expected Utility Theory, but the information presentation format affected choices. Those 11% – 33% making decisions contrary to the medical indications were more likely to be Hispanic, older, more educated, smokers, and to have children in the home. Conclusions In scenarios typical of health risk information, relative risk information led respondents to make non-normative decisions that were "corrected" when the frame used absolute risk information. This population sample made generally rational decisions when presented with absolute risk information, even in the context of a telephone interview requiring remembering rates given. The lack of effect of gender and race suggests that a standard strategy of presenting absolute risk information may improve patient decision-making.

OBJECTIVES: This paper describes the development and pilot testing of a communication skills curriculum based on medical student curriculum and modified for use with patients. METHODS: Six key concepts from our introductory medical education communication skills curriculum were identified. The core knowledge and skills related to these concepts were reorganized into six modules, including presentation materials, handouts and active learning components. The curriculum was pilot tested with three independent groups of non-medical participants, representing a broad cross-section of the community. RESULTS: Participants reported a high level of satisfaction; over 80% found the program helpful for learning new information and skills, and 92% for working with their physicians. Over 90% would recommend the program to others. Participant self-assessments revealed the greatest change in knowledge of medical interviewing. Skill changes were greatest in expressing emotion and efficiently telling the medical story. The pilot tests also highlighted the importance of other issues related to recruitment and health literacy. CONCLUSIONS: This project demonstrates that key concepts underlying doctor-patient communications can be simplified and repackaged for use from the patient's perspective. PRACTICE IMPLICATIONS: Similar curricula can empower patients from all walks of life to better communicate with their health care providers and enhance their healthcare experience. [ABSTRACT FROM AUTHOR]

Some instruments have been developed to evaluate 'decision effectiveness' such as the 'satisfaction with decision (SWD)' and 'decision conflict (DCS)' scales and are validated for the US context. Patients identify further outcome domains that are not fully covered in these scales. We developed a patient-based outcome measure to evaluate risk communication and decision making effectiveness, addressing these further domains and validated for use in the UK. Formulation of items was based on literature review and key informant interviews. The instrument was piloted and developed (including psychometric assessment) in the context of a trial of decision making and risk communication interventions in general practice. Patients were recruited to the trial with known atrial fibrillation, prostatism, menorrhagia or menopausal symptoms. High response rates (96% in first phase) indicated acceptability to patients. A 20 item patient-based outcome measure, with two sub-scales for 'risk communication' and 'confidence in decision', was produced. It allows for paternalistic, shared or informed choice decision making models. Usage in further studies will facilitate systematic reviews. Consequently, lessons for wider application of these interventions in practice, and policy implications regarding greater patient involvement should then be clearer. [ABSTRACT FROM AUTHOR]