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INTRODUCTION/BACKGROUND: This study aimed to describe patient and caregiver preferences for treatments of relapsed or refractory multiple myeloma (MM). MATERIALS AND METHODS: A survey including discrete-choice experiment (DCE) and best-worst scaling (BWS) exercises was conducted among US patients with relapsed or refractory MM and their caregivers. The DCE included six attributes with varying levels including progression-free survival (PFS), toxicity, and mode and frequency of administration. In addition, the impact of treatment cost was assessed using a fixed-choice question. The BWS exercise included 18 items (modes and frequency of administration, additional treatment convenience, and toxicity items). The survey was administered online to patients recruited from the Multiple Myeloma Research Foundation CoMMpass study (NCT01454297). RESULTS: The final samples consisted of 94 patients and 32 caregivers. Avoiding severe nerve damage was most important to patients, followed by longer PFS. Caregivers considered PFS to be the most important attribute. We estimate that a third or more of patients were cost-sensitive, meaning their treatment preference was altered based on cost implications. Caregivers were not cost-sensitive. The three most bothersome treatment features in the BWS exercise were risk of kidney failure, lowering white blood cell counts, and weakening the immune system. CONCLUSION: Patients with relapsed or refractory MM and their caregivers consider many factors including efficacy, toxicity, mode/frequency of administration, and cost in their decisions regarding treatment options. The study provides a basis for future Research on patient and caregiver treatment preferences, which could be incorporated into shared decision-making with physicians.

As new female-initiated HIV prevention products enter development, it is crucial to incorporate women's preferences to ensure products will be desired, accepted, and used. A discrete-choice experiment was designed to assess the relative importance of six attributes to stated choice of a vaginally delivered HIV prevention product. Sexually active women in South Africa and Zimbabwe aged 18-30 were recruited from two samples: product-experienced women from a randomized trial of four vaginal placebo forms and product-naïve community members. In a tablet-administered survey, 395 women chose between two hypothetical products over eight choice sets. Efficacy was the most important, but there were identifiable preferences among other attributes. Women preferred a product that also prevented pregnancy and caused some wetness (p

Introduction: Existing biomedical HIV prevention options, though highly effective, present substantial adherence challenges. End-user input on early-stage design of new HIV prevention approaches is critical to yielding products that achieve high uptake and adherence. The iPrevent Study examined youths' preferences for key attributes of long-acting Pre-Exposure Prophylaxis (PrEP), with a focus on characteristics pertinent to product delivery alongside key modifiable product attributes. Methods: A discrete choice experiment was conducted with female and male youth aged 18 to 24 in two high-density communities in Cape Town, South Africa during the period July 2017 to January 2019. Sexually active, PrEP-naive youth were recruited using population-based sampling; targeted sampling was used to enrol men who have sex with men (MSM). In a series of nine questions, participants were asked to choose between two hypothetical products composed of five attributes (form, dosing frequency, access, pain, insertion site). We used a random-parameters logit model to estimate preference weights and trade-offs among product alternatives. We examined differences across three subgroups: females, men who have sex with only women (MSW) and MSM. Results: A total of 807 participants (401 female) were enrolled with a median age of 21 years. Males included 190 MSM. Most youth had tested for HIV (95%) and reported being HIV-negative (91%). Across all groups, duration of effectiveness was the most important attribute, with strong preference for less frequent dosing. Injections were favoured over implants, though these preferences were strongest for females and MSM. Females preferred a product offered at a health clinic and disliked pharmacy access; all groups preferred the arm as the insertion site. Youth were willing to trade their preferred product form for longer duration. Conclusions: Youth indicated strong preferences for longer duration products. Each attribute nonetheless influenced preferences, offering insight into trade-offs that inform long-acting PrEP development. Keywords: HIV prevention; long-acting pre-exposure prophylaxis; discrete choice experiment; acceptability; adolescent girls and young women; men who have sex with men, 1 | INTRODUCTION End-user input on early stage design of new HIV prevention approaches is critical to yielding products that achieve high uptake and adherence. As evidenced by multiple clinical [...]

Introduction: An evolving haemophilia treatment landscape provides new possibilities for previously unattainable lifestyles. Aim: We sought to understand how people with haemophilia (PwH) and their caregivers value the potential benefits of novel prophylactic treatments. We conducted a discrete‐choice experiment (DCE) to quantify preferences for features of haemophilia treatments among adults and caregivers of children with haemophilia. A best‐worst scaling (BWS) exercise measured the perceived burden of treatment administration features. Methods: A cross‐sectional, web‐based survey was administered to male adults (≥18 years) and caregivers of male children (≤17 years) living with haemophilia in the United States. Respondents evaluated eight pairs of hypothetical haemophilia treatment profiles defined by six attributes in the DCE and 15 features in the BWS. Results: In the DCE, both adults with haemophilia (n = 151) and caregivers (n = 151) prioritised avoiding the risk of developing inhibitor/ anti‐drug antibodies and treatments that allowed for a more active life. They placed a lower priority on reducing the number of spontaneous bleeding episodes, route and frequency of administration, and avoiding the risk of hospitalisation due to adverse events. The BWS documented the burdensomeness of IV infusions and medications that require mixing and refrigeration. Conclusion: PwH and caregivers prefer treatments that enable a more active lifestyle with a lower risk of inhibitor development. Both groups valued the ability to lead an active life over reducing spontaneous bleeding, with caregivers placing the most weight on this attribute. As new treatments expand possibilities, healthcare professionals and PwH should continue to share decision‐making, incorporating clinical judgment and individual preferences. [ABSTRACT FROM AUTHOR]

To explore how individuals with PD balance benefits and burdens when considering adjunctive medications.Methods: US adults (30– 83 years) with self-reported PD, currently treated with LD/CD, who experienced OFF episodes were recruited through the Fox Insight study to complete a discrete-choice experiment survey. Respondents selected among experimentally designed profiles for hypothetical adjunctive PD treatments that varied in efficacy (additional ON time), potential adverse effects (troublesome dyskinesia, risk of diarrhea, risk of change in bodily fluid color), and dosing frequency or the option "No additional medicine". Data were analyzed with random-parameters logit models.Results: Respondents (N=480) would require ≥ 60 additional minutes of daily ON time to accept either a 40% risk of change in bodily fluid color or 10 additional minutes with troublesome dyskinesia daily. Respondents would require 40 additional minutes of daily ON time to accept a 10% risk of diarrhea and 22 additional minutes of daily ON time to switch from 1 additional pill each day to 1 pill with each LD/CD dose. On average, respondents preferred adjunctive PD medication over no additional medication. Results predicted that 59.1% of respondents would select a hypothetical treatment profile similar to opicapone, followed by no additional medication (27.5%) and a hypothetical treatment profile similar to entacapone (13.4%).Limitations: The data collected were based on responses to hypothetical choice profiles in the survey questions. The attributes and levels selected for this study were intended to reflect the characteristics of opicapone and entacapone; attributes associated with other adjunctive therapies were not evaluated.Conclusion: Patients with PD expressed interest in adjunctive treatment to increase ON time and would accept reduced ON time to avoid adverse effects.Plain Language Summary: People with Parkinson's disease may experience OFF time, when their symptoms return between doses of levodopa/carbidopa. Some medicines can reduce OFF time when taken in addition to levodopa/carbidopa. These additional medicines have their own benefits and side effects. In this study, researchers used a survey to understand what side effects people with Parkinson's disease would accept to have more ON time. Respondents were presented with a series of choices between 2 hypothetical medicines that increased daily ON time or no additional medicine. The medicines were described by 5 features (benefits and side effects). Respondents' answers to the survey questions allowed researchers to estimate which unwanted side effects people with Parkinson's disease would accept in exchange for additional ON time. The most important features of a medicine to reduce OFF time, in order, were (1) Lower risk of a change in urine, sweat, or saliva color; (2) Fewer additional minutes with troublesome dyskinesia each day; and (3) Increase in daily ON time. Introducing a 40% risk of change in urine, sweat, or saliva color (from no risk) would require more than 60 minutes of additional daily ON time to offset. An additional 10 minutes of troublesome dyskinesia each day would require more than 60 minutes of additional daily ON time. Introducing a 10% risk of diarrhea (from no risk) would require 40 minutes of additional ON time. Individuals' preferences for the key features of medications that reduce OFF time for people with Parkinson's disease should be considered when making treatment decisions. [ABSTRACT FROM AUTHOR]

We explore differences in perception of national security policies between self-identified liberals, moderates, and conservatives from a national sample of U.S. adults. Using a discrete choice experiment, we also quantify [...]

Purpose: Acid sphingomyelinase deficiency (ASMD) is a rare, progressive, and potentially fatal disease affecting major organs; its symptoms present heterogeneously. Data on the most bothersome symptoms for patients with ASMD types B or A/B and their caregivers or parents are limited. We conducted a survey to quantify the relative impact of potential ASMD symptoms and risks for patients and parents/caregivers. Patients and Methods: Twenty respondents, recruited via National Niemann-Pick Disease Foundation (United States) and Niemann-Pick United Kingdom, took a preference survey: 11 patients who had a self-reported diagnosis of ASMD types B or A/B and 9 parents who had a child with ASMD types B or A/B. Using object-case best-worst scaling, we explored the most and least bothersome among a set of 15 ASMD symptoms/risks selected based on clinical input and qualitative research with patients and caregivers. In 15 experimentally designed questions containing five items each, respondents ranked the symptoms/risks, irrespective of their experiences with them. Data were analyzed using a conditional multinomial logit model. Results: Patients reported constant abdominal pain, severe pain in bones and joints, and severe fatigue to be the most bothersome potential symptoms or risks, followed by a chance of bleeding in the spleen. The next most bothersome potential symptom was constant shortness of breath. Easy bruising and noticeable abdominal enlargement were among the least bothersome symptoms. The most bothersome symptom for parents was bleeding in the spleen. Conclusion: Patients and parents had similar perceptions of the most bothersome potential symptoms/risks. Despite the small sample size typical of rare disease studies, understanding patient preferences is important for such diseases and can inform shared decision-making. [ABSTRACT FROM AUTHOR]

Simple Summary: Several treatments are available for patients with advanced hepatocellular carcinoma (HCC), and it is important to understand patients' treatment priorities and goals regarding such treatment options. In a survey study, we explored 200 patients' preferences for six different features of HCC treatments: months of additional survival, months of maintained daily function, severity of hand-foot syndrome, severity of high blood pressure, risk of bleeding in the digestive tract, and how the medicine is taken. Of the features included in the survey, it was most important to respondents to avoid moderate-to-severe hand-foot syndrome and moderate-to-severe high blood pressure. Respondents considered 10 additional months of maintaining daily functioning to be as important or more important than 10 additional months of survival. For some patients with HCC, maintaining quality of life and avoiding moderate-to-severe side effects may be as important or more important than a medicine's survival benefit. Treatments for unresectable hepatocellular carcinoma (HCC) have varying benefit-risk profiles. We elicited 200 US patients' preferences for attributes associated with various first-line systemic treatments for unresectable HCC in a discrete-choice experiment (DCE) survey. Respondents answered nine DCE questions, each offering a choice between two hypothetical treatment profiles defined by six attributes with varying levels: overall survival (OS), months of maintained daily function, severity of palmar-plantar syndrome, severity of hypertension, risk of digestive-tract bleeding, and mode and frequency of administration. A random-parameters logit model was used to analyze the preference data. Patients regarded an additional 10 months of maintaining daily function without decline to be as important or more important than 10 additional months of OS, on average. Respondents valued avoiding moderate-to-severe palmar-plantar syndrome and hypertension more than extended OS. A respondent would require >10 additional months of OS (the greatest increase presented in the study) on average to offset the increased burden of adverse events. Patients with unresectable HCC prioritize avoiding adverse events that would severely impact their quality of life over mode and frequency of administration or digestive-tract bleeding risk. For some patients with unresectable HCC, maintaining daily functioning is as important or more important than the survival benefit of a treatment. [ABSTRACT FROM AUTHOR]

Patients with moderate-to-severe atopic dermatitis (AD) experience skin lesions and intense itch that substantially affect quality of life. Patients have choices among systemic AD treatments that offer varied benefit–risk profiles. Measure patients' willingness to trade off the risks and benefits of systemic treatments among individuals with a physician-confirmed diagnosis of moderate-to-severe AD. Patients participated in a discrete choice experiment online survey with a series of choices between hypothetical AD treatments defined by six attributes reflecting benefits and risks of treatments (itch reduction, time until noticeable itch reduction, chance of clear or almost clear skin, risk of serious infection, risk of developing acne, and need for prescription topical steroids). Data were analyzed with a random parameters logit model to quantify preferences and the relative importance of attributes for treatment alternatives. Respondents (n = 200) placed the highest relative importance on itch reduction, speed of itch reduction, and skin clearance, and were generally willing to accept clinically relevant levels of risk of serious infection and acne in exchange for treatment benefits. Patients with moderate-to-severe AD were willing to trade clinically relevant treatment risks for greater or more rapid itch reduction and skin clearance offered by systemic therapies. [ABSTRACT FROM AUTHOR]

To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.reseneeco.2006.02.002 Byline: Carol Mansfield, F. Reed Johnson, George Van Houtven Keywords: Hierarchical Bayes; Mixed logit; Children's environmental health; Revealed preference; Air quality index; Cost of illness Abstract: Individuals can reduce their exposure to air pollution by reducing the amount of time they spend outdoors. Reducing outdoor time is an example of an averting behavior that should be measured as part of willingness to pay (WTP) for improvements in air quality. In this paper, we estimate parents' WTP to prevent restrictions on a child's outdoor time from a stated-preference (SP) conjoint survey. We combine this WTP measure with an estimate of reductions in time spent outdoors on high-ozone days from an activity-diary study to estimate this averting behavior component of WTP for reductions in ozone pollution. Author Affiliation: Research Triangle Institute, P.O. Box 12194, Research Triangle Park, NC 27709-2194, United States