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Researchers across the translational research continuum have emphasized the importance of integrating genomics into their research program. To date capacity and resources for genomics research have been limited; however, a recent population-wide genomic screening initiative launched at the Medical University of South Carolina in partnership with Helix has rapidly advanced the need to develop appropriate infrastructure for genomics research at our institution. We conducted a survey with researchers from across our institution (n= 36) to assess current knowledge about genomics health, barriers, and facilitators to uptake, and next steps to support translational research using genomics. We also completed 30-minute qualitative interviews with providers and researchers from diverse specialties (n= 8). Quantitative data were analyzed using descriptive analyses. A rapid assessment process was used to develop a preliminary understanding of each interviewee’s perspective. These interviews were transcribed and coded to extract themes. The codes included types of research, alignment with precision health, opportunities to incorporate precision health, examples of researchers in the field, barriers, and facilitators to uptake, educational activity suggestions, questions to be answered, and other observations. Themes from the surveys and interviews inform implementation strategies that are applicable not only to our institution, but also to other organizations interested in making genomic data available to researchers to support genomics-informed translational research.We highlight the importance of integrating genomics into research, driven by a population-wide genomic screening initiative that has accelerated the need for infrastructure development in genomics research. Surveys and interviews with researchers assessed their knowledge, barriers, facilitators, and next steps for genomics research, informing implementation strategies applicable to the institution and other researchers supporting genomics-informed translational research.Researchers have recognized the significance of integrating genomics into their studies across the translational research continuum. However, limited capacity and resources have hindered progress in genomics research. We conducted a survey and qualitative interviews with researchers and healthcare providers from our institution to assess their understanding of genomics in health, identify barriers, and facilitators to its adoption, and determine next steps for supporting translational research using genomics. Themes identified included different types of research, alignment with precision health, opportunities to incorporate precision health, examples of researchers in the field, barriers, and facilitators to adoption, educational recommendations, unanswered questions, and other valuable observations. The insights gathered from the surveys and interviews informed the development of implementation strategies. These strategies can benefit not only our institution but also other researchers who are interested in providing access to genomic data to support genomics-informed translational research.

In 2021, the Medical University of South Carolina (MUSC) launched In Our DNA SC. This large-scale initiative will screen 100,000 individuals in South Carolina for three preventable hereditary conditions that impact approximately two million people in the USA but often go undetected. In anticipation of inevitable changes to the delivery of this complex initiative, we developed an approach to track and assess the impact of evaluate adaptations made during the pilot phase of program implementation. We used a modified version of the Framework for Reporting Adaptations and Modification-Enhanced (FRAME) and Adaptations to code adaptations made during the 3-month pilot phase of In Our DNA SC. Adaptations were documented in real-time using a REDCap database. We used segmented linear regression models to independently test three hypotheses about the impact of adaptations on program reach (rate of enrollment in the program, rate of messages viewed) and implementation (rate of samples collected) 7 days pre- and post-adaptation. Effectiveness was assessed using qualitative observations. Ten adaptations occurred during the pilot phase of program implementation. Most adaptations (60%) were designed to increase the number and type of patient contacted (reach). Adaptations were primarily made based on knowledge and experience (40%) or from quality improvement data (30%). Of the three adaptations designed to increase reach, shortening the recruitment message potential patients received significantly increased the average rate of invitations viewed by 7.3% (p = 0.0106). There was no effect of adaptations on implementation (number of DNA samples collected). Qualitative findings support improvement in effectiveness of the intervention after shortening the consent form and short-term positive impact on uptake of the intervention as measured by team member’s participation. Our approach to tracking adaptations of In Our DNA SC allowed our team to quantify the utility of modifications, make decisions about pursuing the adaptation, and understand consequences of the change. Streamlining tools for tracking and responding to adaptations can help monitor the incremental impact of interventions to support continued learning and problem solving for complex interventions being delivered in health systems based on real-time data.Our study characterizes the types of adaptations made and shows how changes made to recruitment and outreach strategies impact key reach and implementation outcomes for the genomic screening program.We tracked adaptations to a large-scale population genetic screening program at the Medical University of South Carolina (MUSC) using the Framework for Reporting Adaptations and Modifications-Enhanced (FRAME). We found adaptations during program roll-out that impacted implementation outcomes. Our approach to tracking adaptations for the program allowed us to quantify the utility of modifications, make decision about pursuing changes, and understand consequences of adaptations.

Objective. To define objectively and describe a set of clinically relevant health states that encompass the typical effects of depression on quality of life in an actual patient population. Our model was designed to facilitate the elicitation of patients' and the public's values (utilities) for outcomes of depression. Data Sources. From the depression panel of the Medical Outcomes Study. Data include scores on the 12-Item Short Form Health Survey (SF-12) as well as independently obtained diagnoses of depression for 716 patients. Follow-up information, one year after baseline, was available for 166 of these patients. Methodology. We use k-means cluster analysis to group the patients according to appropriate dimensions of health derived from the SF-12 scores. Chi-squared and exact permutation tests are used to validate the health states thus obtained, by checking for baseline and longitudinal correlation of cluster membership and clinical diagnosis. Principal Findings. We find, on the basis of a combination of statistical and clinical criteria, that six states are optimal for summarizing the range of health experienced by depressed patients. Each state is described in terms of a subject who is typical in a sense that is articulated with our cluster-analytic approach. In all of our models, the relationship between health state membership and clinical diagnosis is highly statistically significant. The models are also sensitive to changes in patients' clinical status over time. Conclusions. Cluster analysis is demonstrably a powerful methodology for forming clinically valid health states from health status data. The states produced are suitable for the experimental elicitation of preference and analyses of costs and utilities. Key Words. Cluster analysis, health status measures, health states, utilities, quality of life, The cost-effectiveness of different strategies for the identification and treatment of depressive illness in primary care practice is the focus of one of the Patient Outcomes Research Team (PORT) projects [...]

Objective. To show cluster analysis as a potentially useful tool in defining common outcomes empirically and in facilitating the assessment of preferences for health states. Data Sources. A survey of [...]

Although tobacco use is associated with elevated morbidity and mortality, its use remains widespread among adults within the United States. Nicotine Replacement Therapy (NRT) products are effective aids that improve rates of tobacco cessation. Many smokers interact with the medical system, such as during hospitalization, without their tobacco use addressed. Hospitalization is a teachable moment for patients to make health-related changes, including tobacco cessation.

Lack of recruitment of qualified research participants continues to be a significant bottleneck in clinical trials, often resulting in costly time extensions, underpowered results, and in some cases early termination. Some of the reasons for suboptimal recruitment include laborious consent processes and access to participants at remote locations. While new electronic consents technologies (eConsent) help overcome challenges related to readability and consent management, they do not adequately address challenges related to remote access. To address this, we have developed an innovative solution called “teleconsent”, which embeds the informed consent process into a telemedicine session. Teleconsent allows a researcher to remotely video conference with a prospective research participant, display and interactively guide participants in real-time through a consent form. When finished, the researcher and participant can electronically sign the consent form and print or download the signed document for archiving. This process can eliminate challenges related to travel and management of personnel at remote sites. Teleconsent has been successfully implemented in several clinical trials. Teleconsent can improve research recruitment by reducing the barriers related to informed consent, while preserving human interaction.

AbstractIntroduction: The use of wireless, electronic, medical records and communications in the prehospital and disaster field is increasing.Objective:This study examines the role of wireless, electronic, medical records and communications technologies on the quality of patient documentation by emergency field responders during a mass-casualty exercise.Methods: A controlled, side-to-side comparison of the quality of the field responder patient documentation between responders utilizing National Institutes of Health-funded, wireless, electronic, field, medical record system prototype (“Wireless Internet Information System for medicAl Response to Disasters” or WIISARD) versus those utilizing conventional, paper-based methods during a mass-casualty field exercise. Medical data, including basic victim identification information, acuity status, triage information using Simple Triage and Rapid Treatment (START), decontamination status, and disposition, were collected for simulated patients from all paper and electronic logs used during the exercise. The data were compared for quality of documentation and record completeness comparing WIISARD-enabled field responders and those using conventional paper methods. Statistical analysis was performed with Fisher’s Exact Testing of Proportions with differences and 95% confidence intervals reported.Results: One hundred simulated disaster victim volunteers participated in the exercise, 50 assigned to WIISARD and 50 to the conventional pathway. Of those victims who completed the exercise and were transported to area hospitals, medical documentation of victim START components and triage acuity were significantly better for WIISARD compared to controls (overall acuity was documented for 100% vs 89.5%, respectively, difference = 10.5% [95%CI = 0.5–24.1%]). Similarly, tracking of decontamination status also was higher for the WIISARD group (decontamination status documented for 59.0% vs 0%, respectively, difference = 9.0% [95%CI = 40.9–72.0%]). Documentation of disposition and destination of victims was not different statistically (92.3% vs. 89.5%, respectively, difference = 2.8% [95%CI = -11.3–17.3%]).Conclusions: In a simulated, mass-casualty field exercise, documentation and tracking of victim status including acuity was significantly improved when using a wireless, field electronic medical record system compared to the use of conventional paper methods.

OBJECTIVE: To delineate the personal, psychosocial, and disease-related factors that may influence rheumatoid arthritis (RA) patients' decisions to participate in clinical trials. METHODS: A total of 191 patients with RA were asked to participate in this survey. The questionnaire collected information on demographics, RA disease-related factors, and the importance of several factors that might influence patients' willingness to participate in clinical trials. Patients were then asked if they would consider participating in a hypothetical study. RESULTS: Participants were 88% female with a mean age of 40.5 years. The ethnic composition was 57% Hispanic, 25% Caucasian, 12% Asian, and 6% African American, with 71% having a family income < $20,000/year. Factors that patients considered important for participation in a clinical study included: the opportunity to help others, the possibility of improved health, early access to new therapy, the availability of free treatments, unknown side effects of the study drug, and the need to stop current therapy. There were strong correlations between the rank order importance weights between Hispanics and Caucasians, suggesting fundamental similarities in preferences. The most important factor was the opportunity to help others. In general, the more important factors were associated with preferences for trial participation. CONCLUSION: This questionnaire identified factors that may affect RA patients' willingness to participate in a study. Patient participation in trials is driven by diverse factors that include altruism and the opportunity for healthcare and improved health. Consideration of these factors may facilitate the inclusion of more diverse patient populations into trials and enhance the applicability of trial results.

We sought to measure utilities for prostate cancer health states in older men.

Disaster response to mass‐casualty incidents represents one of the greatest challenges to a community's emergency response system. Rescuers, field medical personnel, and regional emergency departments and hospitals must often provide care to large numbers of casualties in a setting of limited resources, inadequate communication, misinformation, damaged infrastructure, and great personal risk. Emergency care providers and incident managers attempt to procure and coordinate resources and personnel, often with inaccurate data regarding the true nature of the incident, needs, and ongoing response. In this chaotic environment, new technologies in communications, the Internet, computer miniaturization, and advanced “smart devices” have the potential to vastly improve the emergency medical response to such mass‐casualty incident disasters. In particular, next‐generation wireless Internet and geopositioning technologies may have the greatest impact on improving communications, information management, and overall disaster response and emergency medical care. These technologies have applications in terms of enhancing mass‐casualty field care, provider safety, field incident command, resource management, informatics support, and regional emergency department and hospital care of disaster victims.

OBJECTIVE: To describe a Web-based computer health assessment survey for patients with rheumatoid arthritis (RA) and to evaluate the survey in comparison with current paper versions. METHODS: Utilizing data from a study on RA, we compared results from 43 patients attending a university-based clinic who were each given a paper and a demonstration computer version of a patient self-assessment questionnaire including multiple-choice questions from a multi-dimensional Health Assessment Questionnaire (HAQ); visual analog scales (VAS) for pain, fatigue, and global disease severity; and a tender and swollen joint count reporting tool. Patients were given optional followup surveys to determine their opinion of the computer program. RESULTS: High correlations (intraclass correlation coefficient > 0.9) were seen across methods for the 10-item HAQ and psychological distress scores and the VAS scores for pain and global disease severity. Moderate correlation was observed for the self-efficacy scores, the VAS scores for fatigue, and tender joint counts. The data also revealed a small shift in the mean scores for the HAQ and self-efficacy questions, with patients reporting slightly higher scores on the computer instrument. Overall, patient opinions of the uniquely designed joint count tool were good, with 71% of responding patients answering favorably. CONCLUSION: Web-based computer versions of patient self-assessment surveys in RA are comparable to paper versions, and their use in clinics or over the Internet could dramatically facilitate the ability of physicians to monitor patients' health.

The objective of this study was to demonstrate a multivariate health state approach to analyzing complex disease data that allows projection of long-term outcomes using clustering, Markov modeling, and preference weights.

This study examines the effects of use of an automated computer protocol to correct a common error in utility elicitations—namely, scoring of a health state with a greater impairment as being more desirable than one with lesser impairment. The authors studied the protocol in a sample of 563 members of the Internet-using public. Results revealed that errors were common (17% of ratings) but were typically successfully repaired (individuals who made only 1 or 2 errors had a 75% chance of repairing them). The values of individuals who repaired errors were similar to those without apparent error. In contrast, individuals who refused to repair errors had lower scores for the best health state in the series and higher ones for the worst health state. Results suggest that the repair procedures were successful and that inclusion of utility scores from individuals who fail to repair illogically ordered ratings may bias estimates of mean utilities.

Utility methods that are responsive to changes in desirable outcomes are needed for cost-effectiveness (CE) analyses and to help in decisions about resource allocation.

Background. The use of a simpler procedure for the measurement of utilities could affect primarily the variance or both the mean and the variance of measurements. In the former case, simpler methods would be useful for population studies of preferences; however, in the latter, their use for such studies might be problematic. Purpose. The purpose of this study was to compare the results of utility elicitation using single-item questions to computer elicitation using the Ping-Pong search procedure. Methods. In a convenience sample of 149 primary care patients with symptoms of depression, the authors measured and compared standard gamble (SG) utilities elicited using a single-item “open question” to SG elicitations performed using a computerized interview procedure. Elicitations were performed 1 to 2 weeks apart to minimize memory effects. Results. More than 90% of persons with utilities of 1.0 to the single-item standard gamble had utilities of less than 1.0 on the computer SG instrument. Consistent with this finding, the mean utilities were lower in computer interviews (0.80 vs. 0.90; P< 0.0001 for differences). Within subjects, utility measures had only a fair degree of correlation (r= 0.54). Conclusions. Use of single-item questions to elicit utilities resulted in less precise estimates of utilities that were upwardly biased relative to those elicited using a more complex search procedure.

OBJECTIVES

OBJECTIVES

The objectives of this study were to determine whether there are important differences in how patients, family members, and health care providers (HCPs) value health outcomes in schizophrenia and to assess the degree to which such differences, if they exist, could adversely affect clinical and policy decision making.

Utilities for health conditions, including major depressive disorder, have a theoretical relationship to health-related quality of life (HRQOL). Because of the complexity of utility measurement and the existence of large numbers of completed studies with HRQOL data but not utility data, it would be desirable to be able to estimate utilities from measurements of HRQOL.

If shape of a person's utility function is associated with his health status, as is predicted by Prospect Theory, the use of utilities from the healthy could result in 'de facto' discrimination against the sick.

Health values are important components of medical decisions. Experimental data sug gest that people value health in complex and dynamic ways. Prospect theory is a descriptive theory of choice that may accurately characterize how people assign values to health states. The authors first provide background on prospect theory and how it can be applied to health values. Next, they review the relevant health research and find mixed support for prospect theory. Last, they discuss implications of prospect theory for cost-effectiveness analysis. The application of prospect theory to health deserves further research because it may help clarify the link between health and values. Key words: health values; prospect theory; utility theory; quality of life; patient preferences; decision analysis; cost-effectiveness analysis. (Med Decis Making 1999; 19: 344-352)

Background. In studies of health preferences, utilities for hypothetical health states cannot always be successfully measured. One marker for unsuccessful measurement is violation of "procedural invariance": when the ranking of two health states varies across assessment procedures. Using preference values based on unsuccessful mea surement may result in misinterpretation of patients' attitudes about health. Objective. The authors sought to determine whether people who violated procedural invariance had different preferences than people who satisfied it. Methods. They performed sec ondary analyses of three completed studies that used the same two assessment pro cedures, identifying participants who violated procedural invariance and comparing the mean standard gamble (SG) and visual analog scale (VAS) scores of violators and satisfiers. Participants.Experiment 1, 30 healthy volunteers and 30 patients with car diac arrhythmias; expenment 2, 139 patients with depressive illness; experiment 3, 98 family members of patients with schizophrenia. Results. Rates of violation of proce dural invariance ranged from 16% to 32%. Violation of procedural invariance was not associated with age, education level, race, or gender. Subjects with violations of pro cedural invariance had, in general, less ability to discriminate among states and less reliable VAS and SG measurements, and sometimes had different mean SG and VAS values. Conclusions. Violation of procedural invariance of preferences across scaling methods may be a signal for failure of the measurement process. Researchers should test for procedural invariance and consider reporting data separately for satisfiers and violators. Key words: utility; standard gamble; visual analog scale; cost-effectiveness analysis; decision analysis; computers; preferences. (Med Decis Making 1999;19: 473-481)

Most decision models published in the medical literature take a risk-neutral perspective. Under risk neutrality, the utility of a gamble is equivalent to its expected value and the marginal utility of living a given unit of time is the same regardless of when it occurs. Most patients, however, are not risk-neutral. Not only does risk aversion affect decision analyses when tradeoffs between short- and long-term survival are involved, it also affects the interpretation of time-tradeoff measures of health-state utility. The proportional time tradeoff under- or overestimates the disutility of an inferior health state, depending on whether the patient is risk-seeking or risk-averse (it is unbiased if the patient is risk-neutral). The authors review how risk attitude with respect to gambles for survival duration can be incorporated into decision models using the framework of risk-adjusted quality-adjusted life years (RA-QALYs). They present a simple extension of this framework that allows RA-QALYs to be calculated for Markov-process decision models. Using a previously published Markov-process model of surgical vs expectant treatment for benign prostatic hypertrophy (BPH), they show how attitude towards risk affects the expected number of QALYs calculated by the model. In this model, under risk neutrality, surgery was the preferred option. Under mild risk aversion, expectant treatment was the preferred option. Risk attitude is an important aspect of preferences that should be incorporated into decision models where one treatment option has up-front risks of morbidity or mortality. Key words: risk attitude; Markov models; patient preferences; quality-adjusted life years. (Med Decis Making 1997;17:340-350)

Objective. Elicited preferences for health states vary among scaling methods, manners of describing health states, and other features of the elicitation process. The authors examined the effects of changing the search procedure for a subject's utility on mean utility values. Methods. A randomized controlled trial of two search procedures (titration and "ping-pong") using two otherwise identical computer programs that describe health states related to Gaucher's disease, then measuring subjects' preferences. Setting. Paid, healthy volunteers recruited from the community through advertisements. Re sults. The mean time tradeoff (TTO) and standard gamble (SG) utility values for life with severe anemia and splenomegaly and life with chronic bone pain from Gaucher's disease were between 0.10 and 0.15 higher with the titration search procedure than with the ping-pong procedure. Effects of the search procedure were additive with var iability due to scaling methods, resulting in mean differences in utility ratings for the same health state of as much as 0.28 among procedures and scaling methods. Effects of search procedures on utility values persisted on repeated testing at week 2 and week 3; there was no evidence of convergence to a single "true" utility value over time. Conclusions. The procedure used to search for subjects' utility values strongly influences the results of preference-assessment experiments. Effects of search pro cedures persist on repeated testing. The results suggest that utility values are heavily influenced by, if not created during, the process of elicitation. Thus, utility values elic ited using different search procedures may not be directly comparable. Key words: search procedures; utility elicitations; patient preferences; titration; ping-pong. (Med Decis Making 1998;18:76-83)

Quality-adjustment weights for health states are an essential component of cost-utility anal ysis (CUA). Quality-adjustment weights are obtained by presenting large numbers of subjects with multiattribute descriptions of health states for rating. Comprehending multiattribute health states is a difficult task for most respondents. The authors hypothesized that multimedia (MM) presentation using computers might facilitate this task better than would a paper-based text (Text). To test this hypothesis, they developed closely matched MM and Text descriptions of health states in the first-person narrative style, and developed a method of testing the presentation of a health state. Subjects were randomized to exposure to either MM or Text and subject recall of the health state and recognition of features of the health state were tested. How well defined the preferences of the subjects were after each presentation method was assessed by having the subjects mark on a double-anchored visual-analog scale the "best" and "worst" they believed the quality of life in the health state might be. MM subjects had better recall (11.85 vs 9.44 of a total of 24 meaning units, p = 0.098) and better recognition (4.71 vs 4.22, p = 0.08). The average interval between the "best" and "worst" ratings was shorter for the MM subjects (2.19 cm vs 3.26 cm, p = 0.12). The results suggest that: 1) MM presentation results in better recall and recognition, indicating better transfer of information; 2) MM presentation appears to result in better definition of preferences (a smaller preference interval), suggesting better integration of information into subject preference; and 3) recall and recognition testing of a health-state description can identify material in the description that has an unintended impact on the respondents. Key words: cost-utility analysis; communication medium; quality-adjustment weights; multimedia; health-state de scription. (Med Decis Making 1994;14:336-344)

In this paper, we describe a software system for automated monitoring of free-text data in a medical information system that we call RadTRAC (Radiology Text Report Analyzer and Classifier). RadTRAC uses a medical language processing tool and rules derived from statistical analysis of a database to process free-text chest X-ray (CXR) reports and identify reports that describe new or expanding neoplasms for the purpose of monitoring the follow-up of these patients. To evaluate the RadTRAC system, we examined a set of 470 consecutive radiology reports at the Veterans Administration Medical Center, Palo Alto, CA. We compared RadTRAC classification of CXR reports with retrospective expert classification of the reports and with clinical classification from CXR films as recorded in a logbook while the films were being read. The RadTRAC system had a sensitivity of 90% and a specificity of 82% using the logbook as the gold standard. This was similar to the performance of expert radiologists (sensitivity, 92%; specificity, 90%). We then reviewed the charts, appointment schedule, and subsequent X-ray reports of cases either in the logbook or that were identified by RadTRAC as needing follow-up. Two cases in the logbook could have potentially benefited from an automatic monitoring system to ensure follow-up. RadTRAC identified six confirmed new tumors or new metastatic lesions that were not in the logbook. Six other cases were identified by the RadTRAC system with suspicious X-ray findings that had either no follow-up or no further mention of the X-ray lesion in medical records. This suggests that a reminder system based on the RadTRAC technology would be potentially useful. Copyright 1993, 1999 Academic Press

Objective: While the use of multimedia methods in medical education and decision support can facilitate learning, it also has certain hazards. One potential hazard is the inadvertent triggering of racial and gender bias by the appearance of actors or patients in presentations. The authors hypothesized that race and gender affect preferences. To explore this issue they studied the effects of actors' race and gender on preference ratings for health states that include symptoms of schizophrenia. Design: A convenience sample of patients with schizophrenia, family members of patients, and health professionals was used. Participants were randomly assigned to rate two health states, one portrayed by either a man of mixed race (Hispanic-black) or a white man and the second portrayed by either a white woman or a white man. Measurements: Visual analog scale (VAS) and standard gamble ratings of health state preferences for health states that include symptoms of mild and moderate schizophrenia. Results: Studies of the effects of the race of the actor (n = 114) revealed that racial mismatch between the actor and the participant affected the participant's preferences for health states. Ratings were lower when racial groups differed (mean difference, 0.098 for visual analog scale ratings and 0.053 lower in standard gamble, P = 0.006 for interactions between the race of the subject and the actor). In studies of the effects of a female actress on ratings (n = 117), we found no evidence of a corresponding interaction between the gender of the actor and the study participant. Rather, an interaction between actor's gender and method of assessment was observed. Standard gamble ratings (difference between means, 0.151), but not visual analog scale ratings (difference, 0.005), were markedly higher when the state was portrayed by the actress (P = 0.003 for interactions between actor's gender and method of preference assessment). Differential effects on standard gamble ratings suggest than an actor's gender may influence the willingness of viewers to gamble to gain health benefits (or risk attitude). Conclusions: Educators and researchers considering the use of multimedia methods for decision support need to be aware of the potential for the race and gender of patients or actors to influence preferences for health states and thus, potentially, medical decisions.

Objectives: Describe and evaluate an Internet-based approach to patient decision support using mathematical models that predict the probability of successful treatment on the basis of meta-analytic summaries of the mean and standard deviation of symptom response. Design: An Internet-based decision support tool was developed to help patients with benign prostatic hypertrophy (BPH) determine whether they wanted to use alpha blockers. The Internet site incorporates a meta-analytic model of the results of randomized trials of the alpha blocker terazosin. The site describes alternative treatments for BPH and potential adverse effects of alpha blockers. The site then measures patients' current symptoms and desired level of symptom reduction. In response, the site computes and displays the probability of a patient's achieving his objective by means of terazosin or placebo treatment. Setting: Self-identified BPH patients accessing the site over the Internet. Main Outcome Measures: Patients' perceptions of the usefulness of information. Results: Over a three-month period, 191 patients who were over 50 years of age and who reported that they have BPH used the decision support tool. Respondents had a mean American Urological Association (AUA) score of 18.8 and a desired drop in symptoms of 10.1 AUA points. Patients had a 40 percent chance of achieving treatment goals with terazosin and a 20 percent chance with placebo. Patients found the information useful (93 percent), and most (71 percent) believed this type of information should be discussed before prescribing medications. Conclusions: Interactive meta-analytic summary models of the effects of pharmacologic treatments can help patients determine whether a treatment offers sufficient benefits to offset its risks.

Objective: The World Wide Web (WWW) is a new communications medium that permits investigators to contact patients in nonmedical settings and study the effects of disease on quality of life through self-administered questionnaires. However, little is known about the feasibility and, what is more important, the validity of this approach. An on-line survey for patients with ulcerative colitis (UC) and patients whose UC had been treated with surgical procedures was developed. To understand how patients on the WWW might differ from those in practice and the potential biases in conducting epidemiological research in volunteers recruited on the Internet, post-surgery patients who responded to the WWW survey were compared with those in a surgical practice. Setting: The Internet and private practice surgical clinic. Main outcomes: Scores from the Short form 36 (SF-36) Health Assessment Questionnaire and the Self-Administered Inflammatory Bowel Disease Questionnaire (IBDQ). Results: Over a 5-month period, 53 post-surgery patients enrolled in the Internet study; 47 patients from a surgical clinic completed the same computer-based questionnaire. Surgically treated patients on the WWW were younger than their clinic counterparts (median age category 35–44 years vs. 45–54 years, p = 0.01) but more ill with a lower summary IBDQ score (168 vs. 186, p = 0.019) and lower health status across almost all dimensions of the SF-36 (p = 0.016). Conclusions: It is feasible to conduct epidemiological research on the effects of UC on quality of life on the Web; however, systematic differences in disease activity between volunteer patients on the WWW and “in the clinic” may limit the applicability of results.

Objective: To assess the practicality of an automated computer interview as a method to assess preferences for use in decision making. To assess preferences for outcomes of deep vein thrombosis (DVT) and its treatment. Study Design: A multimedia program was developed to train subjects in the use of different preference assessment methods, presented descriptions of mild post-thrombotic syndrome (PTS), severe PTS and stroke and elicited subject preferences for these health states. This instrument was used to measure preferences in 30 community volunteers and 30 internal medicine physicians. We then assessed the validity of subject responses and calculated the number of quality-adjusted life years (QALYs) for each individual for each alternative. Results: All subjects completed the computerized survey instrument without assistance. Subjects generally responded positively to the program, with volunteers and physicians reporting similar preferences. Approximately 26.5% of volunteers and physicians had preferences that would be consistent with the use of thrombolysis. Individualization of therapy would lead to the most QALYs. Conclusions: Utilization of computerized survey instruments to elicit patient preferences appears to be a practical and valid approach to individualize therapy. Application of this method suggests that there may be many patients with DVT for whom treatment with a thrombolytic drug would be optimal.

Objective: Develop the methodological foundation for interactive use of Markov process decision models by patients and physicians at the bedside. Design: Monte Carlo simulation studies of a decision model comparing two treatments for benign prostatic hypertrophy: watchful waiting (WW) and transurethral prostatectomy (TUR). Measurements: The 95% confidence interval (CI) for the mean of the Markov model; the correlation of a linear approximation with the full Markov model; the predictive performance of the approximation; the information index of specific utilities in the model. Results: The 95% CI for the gain in utility with initial TUR was -1.4 to 19.0 quality-adjusted life-months. A multivariate linear model had an excellent fit to the predictions of the Markov model (R2 = 0.966). In an independent data set, the linear model also had a high correlation with the full Markov model (R2 = 0.967); its predictions were unbiased (p = 0.597, paired t-test); and, in 96.4% of simulated cases, its treatment recommendation was the same. Conclusion: Using the linear model, it was possible to efficiently compute which health state had the largest contribution to the variance of the decision model. This is the most informative utility value to elicit next. The most informative utility at any point in a sequence changed depending on utilities previously entered into the model. A linear model can be used to approximate the predictions of a Markov process decision model.