F. Reed Johnson

• Ph.D.
• Professor at Duke University

INTRODUCTION Many patients with inflammatory bowel disease (IBD) experience treatment failures despite availability of effective advanced biologic and small-molecule therapies with differing mechanisms of action. Dual biologic therapy (DBT) is being explored to improve efficacy outcomes and address unmet needs in this difficult-to-treat population....

BACKGROUND Regulatory approval of the first dual-chamber leadless pacemaker system provides patients an alternative to conventional transvenous pacemakers. The study objective was to quantify the preferences of patients for pacemaker features. METHODS Patients with a de novo (ie, initial) pacemaker indication were recruited from 7 US sites to comp...

Background In 2019, the US Food and Drug Administration issued a warning that symptomatic relief from claudication using paclitaxel-coated devices might be associated with an increase in mortality over 5 years. We designed a discrete-choice experiment (DCE) to quantify tradeoffs that patients would accept between a decreased risk of clinically driv...

This study was designed to test hypotheses regarding the path dependence of health-outcome values in the form of linear additivity of health-state utilities and diminishing marginal utility of health outcomes. We employed a discrete-choice experiment to quantify patient treatment preferences for major depressive disorder. In a series of choice ques...

Introduction Despite decades of research on risk-communication approaches, questions remain about the optimal methods for conveying risks for different outcomes across multiple time points, which can be necessary in applications such as discrete choice experiments (DCEs). We sought to compare the effects of 3 design factors: 1) separated versus int...

Background: Regulatory approval of the first dual-chamber leadless pacemaker (PM) system provides patients an alternative to conventional transvenous pacemakers. Objective: To quantify patients' preferences for pacemaker features. Methods: Patients with a de-novo PM indication were recruited from 7 US sites to complete a discrete-choice experiment...

Background Chronic cough is common, negatively affects quality of life and has limited treatment options. Inhibition of purinergic signalling is a promising therapeutic approach but is associated with taste-related adverse effects. Little is known about treatment preferences from the perspective of patients with chronic cough, such as trade-offs be...

This study aimed to describe quality of life for patients with chronic cough (CC) and identify meaningful attributes that affect patient treatment preferences to inform the design of a quantitative preference study. Eligible patients (≥ 18 years) with a CC (> 8 weeks) participated in qualitative interviews with two defined steps. Step one: concept...

Background: Because immunizing large numbers of healthy people could be required to reduce a relatively small number of infections, disease incidence has a large impact on cost effectiveness, even if the infection is associated with very serious health outcomes. In addition to cost effectiveness, the US Advisory Committee on Immunization Practices...

Background While clinical practice guidelines underscore the need to incorporate patient preferences in clinical decision making, incorporating meaningful assessment of patient preferences in clinical encounters is challenging. Structured approaches that combine quantitative patient preferences and clinical evidence could facilitate effective patie...

Objective To determine patient acceptability of benefit-risk trade-offs in selecting treatment options for drug-resistant mesial temporal lobe epilepsy, including open brain surgery, laser ablation (laser interstitial thermal therapy [LITT]), and continued medications. Methods A discrete-choice experiment survey was developed, consisting of 20 ver...

Background Regulatory and clinical decisions involving health technologies require judgements about relative importance of their expected benefits and risks. We sought to quantify heart-failure patients’ acceptance of therapeutic risks in exchange for improved effectiveness with implantable devices. Methods Individuals with heart failure recruited...

Background Women with inflammatory bowel disease (IBD) face difficult decisions regarding treatment during pregnancy: while the majority of IBD medications are safe, there is substantial societal pressure to avoid exposures during pregnancy. However, discontinuation of IBD medications risks a disease flare occurring during pregnancy.Objective This...

Context Health systems should aim to deliver on what matters most to patients. With respect to end of life (EOL) care, knowledge on patient preferences for care is currently lacking. Objective To quantify preference weights for key EOL care indicators. Methods We developed a discrete choice experiment (DCE) survey with 13 key indicators related t...

Policy Points • Public funding for mental health programs must compete with other funding priorities in limited state budgets. • Valuing state-funded mental health programs in a policy-relevant context requires consideration of how much benefit from other programs the public is willing to forgo to increase mental health program benefits and how mu...

Background ‘Hope’ is a construct in patient-centered value frameworks, but few studies have attempted to measure the value of hope separately from treatment-related gains in quality of life and survival to support its application in economic evaluation. Objective To generate quantitative information on the “value of hope”. Methods We designed a d...

Violations of the assumptions of complete information [CI] and independence of irrelevant alternatives (IIA) in discrete‐choice experiment (DCE) data imply sensitivity of preference estimates to the decision context and the alternatives evaluated. There is a paucity of evidence on how these two assumptions affect health‐preference results and wheth...

Background: Recently developed peanut desensitization treatment reduces the incidence of allergic reactions, the anxiety associated with the risk of accidental exposure, and the burden of precautionary behavior. Eliciting parent preferences for tradeoffs involving treatment effectiveness, tolerability, costs, and convenience quantifies the burden...

Objective To assess preferences of women with ovarian cancer regarding features of available anti-cancer regimens for platinum-resistant, biomarker-positive disease, with an emphasis on oral PARP inhibitor and standard intravenous (IV) chemotherapy regimens. Methods A discrete-choice-experiment preferences survey was designed, tested, and administ...

Objectives To test the convergent validity of simple and more complex study designs in a discrete-choice experiment (DCE) of multiple sclerosis (MS) treatment preferences. Methods Five hundred US adults with MS completed an online DCE survey. Respondents answered 8 choice questions with pairs of constructed MS treatment profiles defined by delays...

Background: Total knee arthroplasty (TKA) is a common treatment for end-stage knee osteoarthritis but is associated with increased complication rates compared with unicompartmental knee arthroplasty (UKA). UKA offers better functional outcomes but is associated with a higher risk of revision. The purpose of this study was to apply good-practice, s...

Background Novel ketamine-based pharmacotherapies can reduce depressive symptoms among patients with treatment-resistant depression (TRD), but associated short-term symptoms and potential adverse events raise complex benefit-risk questions. Methods A web-based discrete-choice experiment was administered to 161 esketamine-treated TRD subjects parti...

Objective To conduct a discrete-choice experiment to quantify Americans’ acceptance of severe acute respiratory syndrome coronavirus 2 infection risks for earlier lifting of social-distancing restrictions and diminishing the pandemic’s economic impact. Methods We designed a discrete-choice experiment to administer 10 choice questions to each respo...

We designed a discrete-choice experiment to quantify the extent to which US adults would accept greater risk of infection with SARS-CoV-2 in return for lifting social-distancing restrictions and diminishing the economic impact of the COVID-19 pandemic. 5953 adults representing all 50 states had 4 distinctly different preference patterns. About 37%...

The International Society for Pharmacoeconomics and Outcomes Research (ISPOR)’s “Good Practices Task Force” reports are highly cited, multistakeholder perspective expert guidance reports that reflect international standards for health economics and outcomes research (HEOR) and their use in healthcare decision making. In this report, we discuss the...

Objective: To measure preferences of women with ovarian cancer regarding risks, side effects, costs and benefits afforded by maintenance therapy (MT) with a poly ADP ribose polymerase (PARP) inhibitor. Methods: A discrete-choice experiment elicited preferences of women with ovarian cancer regarding 6 attributes (levels in parentheses) relevant t...

Background: The Food and Drug Administration's Center for Drugs and Radiological Health issued Guidance in 2016 on generating patient preference information to aid evaluation of medical devices. Consistent with this guidance, we aimed to provide quantitative patient preference evidence on benefit-risk tradeoffs relevant to transcatheter mitral val...

Introduction Quantitative data on patients’ willingness to accept benefit-risk tradeoffs with new medical procedures can provide useful information to regulators and clinicians. We adhered to 2016 Guidance from the FDA's Center for Drugs and Radiological Health to generate evidence on patient preferences relevant to potential risks and benefits wit...

Background: The objective of the study was to understand respondents' willingness to accept hypothetical treatment-related risks in return for the benefit of additional time with normal memory from potential Alzheimer's disease interception therapies. Methods: A US web-based discrete-choice survey was administered to respondents ages 60 to 85 ye...

5558 Background: Maintenance therapy with PARP inhibitors has become prevalent in treating ovarian cancer. However, the preferences of women with ovarian cancer regarding the risks, side effects and benefits afforded by maintenance therapies are largely unstudied. Methods: A discrete choice experiment was designed to elicit the preferences of women...

Background & aims: Patients with Crohn's disease (CD) must make decisions about their treatment. We aimed to quantify patients' preferences for different treatment outcomes and adverse events. We also evaluated the effects of latent class heterogeneity on these preferences. Methods: An online stated-preference survey was completed by 812 individ...

Background The popularity of quality-adjusted life years (QALYs) has been resistant to concerns about validity and reliability. Utility-theoretic outcome equivalents are widely used in other areas of applied economics. Equivalence values can be derived for time, money, risk, and other metrics. These equivalence measures preserve all available infor...

Background Corticosteroids (CS) and anti-TNF drugs are used to treat Crohn’s disease (CD). In this study, we assessed the net health benefit of initiating anti-TNF therapy relative to additional CS use in CD using a novel combination of a retrospective cohort study and a simulation model. Methods Using Medicaid data from 2001 to 2005 and Medicare...

Objectives To develop a tool for testing internal validity of discrete choice experiment (DCE) data, deploy the program, and collect summary test results from a sample of active health researchers to demonstrate the practical utility of the tool in a wide range of health applications. Methods A previously developed Gauss program had been in use fo...

Background: The Goldman dilemma presented athletes with a Faustian bargain that guaranteed winning an Olympic gold medal in their sport but resulted in certain death 5 years later. Athletes' responses to Goldman's bargain were reported from 1982 to 1995. Several studies subsequently evaluated people's willingness to accept the bargain proposed in...

Background: Formal incorporation of patients' perspectives is becoming increasingly important in medical product development and decision making. This article shares practical advice regarding how patient advocacy organizations, the pharmaceutical industry, and academic experts in stated-preference research can effectively partner on benefit-risk...

This corrects the article DOI: 10.1038/gim.2016.61.

Purpose: The purpose of this study was to provide quantitative evidence of patients’ tolerance for therapeutic risks associated with psoriasis treatments that could offer psoriasis improvements beyond the PASI 75 benchmark. Materials and methods: We used a discrete-choice experiment in which respondents chose between competing psoriasis treatments...

Background: As more studies report on patient preferences for diabetes treatment, identifying diabetes outcomes other than glycated hemoglobin (HbA1c) to describe effectiveness is warranted to understand patient-relevant, benefit-risk tradeoffs. Objective: The aim of the study was to evaluate how preferences differ when effectiveness (glycemic c...

We examine key study design challenges of using stated-preference methods to estimate the value of whole-genome sequencing (WGS) as a specific example of genomic testing. Assessing the value of WGS is complex because WGS provides multiple findings, some of which can be incidental in nature and unrelated to the specific health concerns that motivate...

Demands for greater transparency in US regulatory assessments of benefits and risks, together with growing interest in engaging patients in Food and Drug Administration regulatory decision making, have resulted in several recent regulatory developments. Although Food and Drug Administration’s Center for Drug Evaluation and Research (CDER) and Cente...

We investigated the perceived value of government programs on early-childhood development as a means of reducing childhood poverty. We incorporated preferences for the process as well as the outcome by developing two stated-preference survey instruments. One survey directly elicited respondents’ willingness to pay specifically for high-quality, int...

Benefit-risk assessment is the foundation for decision making throughout the life cycle of medical products. Because patients are the beneficiaries of the efficacy of medical treatments and also bear their possible risks, their perspectives and judgments about value and the relative importance of benefits and risks should be at the heart of the med...

This study demonstrates how experimental survey methods can be used to assess preferences for budget-constrained combinations of public and publicly provided goods and services. The study shows how to calculate welfare changes based on preferences for increases and decreases in programs within particular budget portfolios, and quantifies the effect...

Purpose: Whole-genome sequencing (WGS) can be used as a powerful diagnostic tool as well as for screening, but it may lead to anxiety, unnecessary testing, and overtreatment. Current guidelines suggest reporting clinically actionable secondary findings when diagnostic testing is performed. We examined preferences for receiving WGS results. Method...

Stated-preference methods increasingly are used to quantify preferences in health economics, health technology assessment, benefit-risk analysis and health services research. The objective of stated-preference studies is to acquire information about trade-off preferences among treatment outcomes, prioritization of clinical decision criteria, likely...

For optimal solutions in health care, decision makers inevitably must evaluate trade-offs, which call for multi-attribute valuation methods. Researchers have proposed using best-worst scaling (BWS) methods which seek to extract information from respondents by asking them to identify the best and worst items in each choice set. While a companion pap...

Objective: The diagnosis of Alzheimer's disease (AD) remains difficult. Lack of diagnostic certainty or possible distress related to a positive result from diagnostic testing could limit the application of new testing technologies. The objective of this paper is to quantify respondents' preferences for obtaining AD diagnostic tests and to estimate...

Best-worst scaling (BWS), also known as maximum-difference scaling, is a multiattribute approach to measuring preferences. BWS aims at the analysis of preferences regarding a set of attributes, their levels or alternatives. It is a stated-preference method based on the assumption that respondents are capable of making judgments regarding the best a...

Objective: Fragile X syndrome (FXS) is the most common inherited form of intellectual disability. The objective of this study was to determine the relative importance that caregivers place on improving different phenotypic traits observed in males with FXS to better understand the greatest medical needs for developing and evaluating FXS treatments...

Objectives: Biomarkers, endoscopy and imaging tests can identify patients at increased risk for early recurrence of symptomatic inflammatory bowel disease (IBD). However, patients may be unwilling to accept additional medical therapy risks related to therapy escalation to avoid a future disease relapse. We sought to quantify IBD patients' willingn...

•A meta-simulation strategy analyzes what affects utility-difference precision.•Meta-data are obtained from 34 individual DCE patient-preference data sets.•Utility-difference precision is regressed on sample size and study characteristics.•Study-design features affect precision more than experimental-design efficiency.•An empirical sample-size powe...

Expected-utility theory is embraced by some researchers because of its theoretical and empirical tractability, although empirical testing has exposed systematic behavioral inconsistencies that violate the axiom of independence in the theory. In particular, empirical evidence suggests that people making choices under uncertainty do not have a unique...

Previous studies suggest that efficacy is more important than side-effect risks to psoriasis patients. However, those studies did not consider potentially fatal risks of biologic treatments. To quantify the risks patients are willing to accept for improvements in psoriasis symptoms. Adults with a self-reported physician diagnosis of psoriasis were...

Our objective was to quantify preferences and stated adherence for inhaled antibiotic treatments in cystic fibrosis (CF). Adult CF patients and parents of pediatric patients in the US who were members of the Cystic Fibrosis Foundation and who had Pseudomonas aeruginosa at least twice a year completed an online, discrete-choice experiment survey (re...

The objective of this study was to quantify patients' preferences related to benefits and risks of antipsychotic treatments for schizophrenia and to assess the relative importance of treatment attributes and adherence. Treatment-related preferences among U.S. residents with a self-reported physician diagnosis of schizophrenia were assessed via a di...

Background Best-practice guidelines for stated-preference methods suggest there is a limit to the number of attributes respondents can reliably evaluate. This study explores a cost-effective solution to combining elicitation formats from a single study to obtain more preference information from a given sample while limiting respondents' cognitive b...

The value of the information that genetic testing services provide can be questioned for insurance-based health systems. The results of genetic tests oftentimes may not lead to well-defined clinical interventions; however, Lynch syndrome, a genetic mutation for which carriers are at an increased risk for colorectal cancer, can be identified through...

PurposeTo measure adolescent girls’ preferences over features of human papillomavirus (HPV) vaccines in order to provide quantitative estimates of the perceived benefits of vaccination and potential vaccine uptake. Design/methodology/approachA discrete choice experiment (DCE) survey was developed to measure adolescent girls’ preferences over featur...

Objective: The objectives were to quantify psychiatrists' judgments of the benefits and risks of antipsychotic treatments of patients with schizophrenia and to evaluate how patient adherence history affects these judgments. Methods: Weights assigned by respondents to risks, benefits, and alternative drug formulations in the treatment of schizoph...

To estimate the relative importance that Alzheimer's disease (AD) caregivers in the United States and Germany place on preserving patients' ability to perform activities of daily living. US and German residents providing care for a person with AD completed an online preference survey. Each respondent completed five best-worst scaling questions. Eac...