Ranking Exercise Research Articles

Developing acceptable contraceptive methods: Mixed-method findings on preferred method characteristics from Burkina Faso and Uganda

Background: Unmet need remains high in developing regions. New contraceptive technologies may improve uptake and use. This study examines desirable product characteristics. Methods: We added a module to the female questionnaire of the PMA2020 surveys in Burkina Faso and Uganda and conducted 50 focus group discussions (FGDs) with women, 10 FGDs with men, and 37 in-depth interviews (IDIs) with providers across the two countries. FGDs with women and IDIs with providers included a semi-structured ranking exercise on pre-selected product characteristics. Results: Effectiveness, duration, few side effects, cost, and access were the characteristics most commonly reported as important in choosing a method by survey respondents across both countries. Half or more of women surveyed in each country would like a method that lasts at least one year, while 65% in Burkina Faso and 40% in Uganda said they would use a method causing amenorrhea. Qualitative findings show that women want methods with minimal and predictable side effects. Reactions to increased bleeding were negative, especially in Burkina Faso, but perspectives on reduced bleeding were more mixed. Women and providers preferred methods that are discreet and not user-dependent, and associate duration with convenience of use. Some women in Uganda expressed concerns about the invasive nature of long-acting methods, and cost was an important consideration in both countries. In the ranking exercise, discreet use and few side effects often ranked high, while causing amenorrhea and not requiring a pelvic exam often ranked low. Conclusion: Product development should consider user preferences for success in these settings.

Developing acceptable contraceptive methods: Mixed-method findings on preferred method characteristics from Burkina Faso and Uganda.

Background: Unmet need remains high in developing regions. New contraceptive technologies may improve uptake and use. This study examines desirable product characteristics. Methods: We added a module to the female questionnaire of the PMA2020 surveys in Burkina Faso and Uganda and conducted 50 focus group discussions (FGDs) with women, 10 FGDs with men, and 37 in-depth interviews (IDIs) with providers across the two countries. FGDs with women and IDIs with providers included a semi-structured ranking exercise on pre-selected product characteristics. Results: Effectiveness, duration, few side effects, cost, and access were the characteristics most commonly reported as important in choosing a method by survey respondents across both countries. Half or more of women surveyed in each country would like a method that lasts at least one year, while 65% in Burkina Faso and 40% in Uganda said they would use a method causing amenorrhea. Qualitative findings show that women want methods with minimal and predictable side effects. Reactions to increased bleeding were negative, especially in Burkina Faso, but perspectives on reduced bleeding were more mixed. Women and providers preferred methods that are discreet and not user-dependent, and associate duration with convenience of use. Some women in Uganda expressed concerns about the invasive nature of long-acting methods, and cost was an important consideration in both countries. In the ranking exercise, discreet use and few side effects often ranked high, while causing amenorrhea and not requiring a pelvic exam often ranked low. Conclusion: Product development should consider user preferences for success in these settings.

Examining the practical limits of batch effect-correction algorithms: When should you care about batch effects?

Batch effects are technical sources of variation and can confound analysis. While many performance ranking exercises have been conducted to establish the best batch effect-correction algorithm (BECA), we hold the viewpoint that the notion of best is context-dependent. Moreover, alternative questions beyond the simplistic notion of “best” are also interesting: are BECAs robust against various degrees of confounding and if so, what is the limit? Using two different methods for simulating class (phenotype) and batch effects and taking various representative datasets across both genomics (RNA-Seq) and proteomics platforms, we demonstrate that under situations where sample classes and batch factors are moderately confounded, most BECAs are remarkably robust and only weakly affected by upstream normalization procedures. This observation is consistently supported across the multitude of test datasets. BECAs do have limits: When sample classes and batch factors are strongly confounded, BECA performance declines, with variable performance in precision, recall and also batch correction. We also report that while conventional normalization methods have minimal impact on batch effect correction, they do not affect downstream statistical feature selection, and in strongly confounded scenarios, may even outperform BECAs. In other words, removing batch effects is no guarantee of optimal functional analysis. Overall, this study suggests that simplistic performance ranking exercises are quite trivial, and all BECAs are compromises in some context or another.

Fossil fuels are harming our brains: identifying key messages about the health effects of air pollution from fossil fuels

BackgroundPrevious research suggests that providing generalized information about the health implications of air pollution from fossil fuels may be effective at promoting public support for a transition to cleaner sources of energy. We sought to extend that work by identifying the specific messages about the health implications of air pollution from fossil fuels that are most and least concerning to people, and whether rankings of concern vary among different audiences. We also hypothesized that reading the statements would influence people’s attitudes and behavioral intentions in a manner supportive of a transition to cleaner sources of energy.MethodsWe conducted a survey with a diverse sample of U.S. adults (n = 1644) from a non-probability internet panel. Using maximum difference scaling, participants ranked a set of ten statements that revealed which statements were the most and least concerning to them. We also measured attitudes about air pollution and energy use before and after the ranking exercise to assess changes in opinion caused by cumulative exposure to the messages.ResultsAcross all sub-groups examined, participants were most concerned by a message about the neurological impacts of air pollution on babies and children. After the ranking exercise, participants expressed increases in perceived health harm of air pollution and fossil fuels, a desire for more clean energy, and intention to engage in consumer advocacy to support clean energy.ConclusionsTo our knowledge, this study is the first to assess how people respond to information about the neurological health harms of air pollution from fossil fuels. While efforts to communicate the cardio-pulmonary health harms of air pollution are well established, our study suggests that efforts should now be organized to communicate the neurological effects of air pollution from fossil fuels, especially the neuro-developmental effects on babies and children.

Simplified Dynamic Modeling of Faulted Turbidite Reservoirs: A Deep-Learning Approach to Recovery-Factor Forecasting for Exploration

Summary Faults are geological features that are essential in considering the development of hydrocarbon reservoirs. Significant resources (appraisal costs and manpower) are often deployed to locate them and assess their connectivity more accurately so that adequate investment decisions can be made. Early in a project's life, data might be sparse or the time that can be dedicated to data processing might be limited. An estimate of the impact of faults can be derived by considering the impact of analogous fault patterns in similar reservoir environments. A significant number of discoveries consist of channelized turbidite reservoirs draped over deepwater toe–thrust anticlines. To understand the effects of various fault patterns on the recovery factors of structurally complex turbidite reservoirs, we first perform extensive flow–simulation–based multidimensional sensitivity studies using realistic channelized stratigraphic architectures. Many of these reservoirs contain high–porosity, high–permeability channels, light oil, limited aquifer drive, and a limited number of fault populations. To constrain the potential impacts of the faults, a generic reservoir model was constructed and simulated with varying reservoir and fault properties. Because the input parameters are known (e.g., fault–zone thickness and permeability, shale–drape coverage, and oil viscosity), the relative importance of each variable can be quantified. The simulation results show that the impacts of the faults on reservoir performance vary systematically with the fault length and orientation, the undeformed–reservoir permeability, and the fault permeability. The recovery factors are relatively insensitive to fault–zone thickness, net/gross ratio, and porosity. The time–delay effect of the faults is significant in reservoirs with a permeability of approximately 100 md but not in darcy–quality reservoirs. In most fault scenarios, the recovery factors from simulations with high–permeability faults range from approximately 30% in 100–md reservoirs to approximately 45% in 3,000–md reservoirs, equivalent to 75 to 96% of the recovery factors of the unfaulted reservoirs. In comparison, assuming the most likely fault permeabilities, the recovery factors decrease to circa 20% in 100–md reservoirs and circa 41% in 3,000–md reservoirs, equivalent to 40 to 85% of the values in unfaulted reservoirs. To learn and predict the effects of faults on the recovery factor in a very fast and reasonably generic fashion in deepwater toe–thrust anticlines, we have developed an accurate deep–learning (DL) based surrogate model that predicts the structure connectivity factors as a function of recovery time. These factors are then used for discounting the recovery factors computed by simpler and easier–to–construct unfaulted models. The surrogate model is a very fast and advanced proxy for the multidimensional structure connectivity factor function and operates without resorting to any new flow simulation with a faulted model. We describe the novel DL architecture used for constructing the surrogate model and quantitatively prove its effectiveness. We finally demonstrate an example real–life application of the surrogate model on an exploration–stage prospect–ranking exercise.

Priorities for the effective implementation of osteoarthritis management programs: an OARSI international consensus exercise

The Joint Effort Initiative was endorsed by Osteoarthritis Research Society International (OARSI) in 2018 as a collaboration between international researchers and clinicians with an interest in the implementation of osteoarthritis management programs (OAMPs). This study aimed to identify and prioritise activities for future work of the Joint Effort Initiative. A survey was emailed to delegates of the 2018 OARSI World Congress attending a pre-conference workshop or with a known interest in OAMPs (n=115). Delegates were asked about the most important issues regarding OAMP implementation. The top 20 issues were synthesised into 17 action statements, and respondents were invited to participate in a priority ranking exercise to determine the order of importance of the statements. Survey respondents (n=51, 44%) were most commonly female (71%), with an allied health background (57%), affiliated with universities (73%) from Oceania (37%), and Europe/UK (45%). The five highest ranked action statements were: CONCLUSION: Prioritising statements will bring focus to the future work of the Joint Effort Initiative in the future and provide a basis for longer-term actions.

Development of a patient reported outcome measures for measuring the impact of visual impairment following stroke

BackgroundAmong the available patient-reported outcome measures (PROMs) there is an absence of a PROM with a specific focus on the impact of the wide variety of visual impairments following stroke.Our aim was to develop a patient reported quality of life outcome measure for stroke survivors with visual impairment.MethodsPotential items were sourced from a combination of existing PROMs from a systematic review and qualitative in-depth interviews, duplicates were removed and items shortlisted. The initial pilot instrument was created following a ranking exercise of these potential items and consultation with stroke survivors. Version 1 was piloted with 37 stroke survivors at acute and chronic stages. Version 2 was piloted with 243 stroke survivors with visual impairment at acute and chronic stages. This data was analysed using the Rasch measurement model. Simultaneously, items from Version 2 underwent a Delphi process with stroke survivors and stroke clinicians, to assess the importance of each item. Final consensus decisions on item removal were made using the combined analysis from the Rasch measurement model and Delphi process in a nominal group meeting.ResultsDue to the wide range of rank given to the majority of categories/items, only two items were discarded. Version 1 comprised of 102 items with 5 response categories relating to amount of difficulty. The pilot of Version 1 allowed item reduction based on analysis of floor/ceiling effects and not applicable responses. Version 2 comprised of 62 items. Within the nominal group meeting, the expert panel created a set of rules which aided them with decision making in addition to the Rasch and Delphi analysis data. This resulted in the removal of 43 items and the combination of seven items to create three new items. The expert panel also recommended the rewording of three items.ConclusionThe Brain Injury associated Visual Impairment Impact Questionnaire (BIVI-IQ-15), a 15-item instrument with 4 response categories has been developed for capturing vision-related quality of life of stroke survivors with any of the predominant types of visual impairment, in the presence of other impairments and for both inpatients and outpatients.

Developing acceptable contraceptive methods: Mixed-method findings on preferred method characteristics from Burkina Faso and Uganda

Background: Unmet need remains high in developing regions. New contraceptive technologies may improve uptake and use. This study examines desirable product characteristics. Methods: We added a module to the female questionnaire of the PMA2020 surveys in Burkina Faso and Uganda and conducted 50 focus group discussions (FGDs) with women, 10 FGDs with men, and 37 in-depth interviews (IDIs) with providers across the two countries. FGDs with women and IDIs with providers included a semi-structured ranking exercise on pre-selected product characteristics. Results: Effectiveness, duration, few side effects, cost, and access were the characteristics most commonly reported as important in choosing a method by survey respondents across both countries. Half or more of women surveyed in each country would like a method that lasts at least one year, while 65% in Burkina Faso and 40% in Uganda said they would use a method causing amenorrhea. Qualitative findings show that women want methods with minimal and predictable side effects. Reactions to increased bleeding were negative, especially in Burkina Faso, but perspectives on reduced bleeding were more mixed. Women and providers preferred methods that are discreet and not user-dependent, and associate duration with convenience of use. Some women in Uganda expressed concerns about the invasive nature of long-acting methods, and cost was an important consideration in both countries. In the ranking exercise, discreet use and few side effects often ranked high, while causing amenorrhea and not requiring a pelvic exam often ranked low. Conclusion: Product development should consider user preferences for success in these settings.

The Patient Perspectives on Future Therapeutic Options in NASH and Patient Needs.

Background: Non-alcoholic steatohepatitis (NASH) is a chronic liver disease with severe complications and without approved therapies. Currently, there is limited data on the overall burden of the disease for patients or on patient needs and preferences. This study investigates patient preferences in relation to potential future therapies for NASH. In addition, the factors that are relevant to patients and their importance in relation to future treatment options are explored.Method: Telephone in-depth interviews (TDIs) preceded an online 30-min quantitative survey. The online survey included (1) multiple choice questions (MCQs) on NASH diagnosis and disease background. (2) An exercise to determine patients' satisfaction levels with information provided at diagnosis, and to explore symptomatology in detail. (3) Exercises to evaluate potential new products and product attributes, including a “drag and drop” ranking exercise, and an adaptive choice-based conjoint exercise (ACBC). (4) The EQ-5D-5L questionnaire and the Visual Analog Scale (VAS), which measures patients' health status. (5) Collection of socio-demographic data, and (6) Questions to measure patient satisfaction with the survey.Results: There were 166 patients included in this study from Canada [n = 36], Germany [n = 50], the UK [n = 30], and USA [n = 50]. Fifty seven percent of patients [n = 94] had had a liver biopsy for confirmation of NASH. Patients were often unable to link their symptoms to NASH or other conditions. ACBC results showed that efficacy, defined as “impact on liver status” was the single most important attribute of a potential future NASH therapy. Other attributes considered to have secondary importance included impact on weight, symptom control and the presence of side effects. The EQ-5D utility score was 0.81 and VAS = 67.2.Conclusion: “Impact on liver status” is the primary outcome sought. Patients demonstrate a general lack of understanding of their disease and appeared to be unfamiliar with longer-term consequences of NASH. It is necessary to improve patient understanding of NASH and its progressive nature, and there is a need for improving confirmatory diagnosis and monitoring.

Policy Brief - What's in a Name? A Search for Alternatives to "VSL".

Benefit-cost analyses of environmental, health, and safety regulations often rely on an estimate of the value of statistical life (VSL) to calculate the aggregate benefits of reducing human mortality risk. The VSL represents the marginal rate of substitution between mortality risk and money. Although this concept is well-understood by economists, it is viewed by many non-economists as confusing technical jargon that borders on the immoral. Based on focus groups and a quantitative ranking exercise, this article describes a systematic approach for identifying and testing alternatives to the VSL terminology, with the goal of identifying an alternative term that more clearly communicates the VSL concept to a broad audience.

Awareness of and attitudes to sexually transmissible infections among gay men and other men who have sex with men in England: a qualitative study.

Eight focus group discussions (FGDs) with a total of 61 MSM in four English cities included a ranking exercise to gauge how 'scary' participants thought 11 STIs are. The exercise sought insights into participants' awareness of, knowledge about and attitudes towards STIs and blood-borne viruses (BBVs). FGDs were audio-recorded, transcribed and data analysed thematically. All groups ranked HIV and Hepatitis C virus (HCV) as the scariest infections, and the majority ranked syphilis and herpes as highly scary. Scabies was ranked as the least scary by most groups. Rankings were dependent on how well informed participants felt about an infection, its transmission mechanisms, health affect and the availability of vaccines and treatment. Personal experience or that of friends influenced perceptions of particular infections, as did their prevalence, treatment options, visibility of symptoms and whether an STI could be cleared from the body. The study findings suggest that, although some MSM are well informed, there is widespread lack of knowledge about the prevalence, modes of transmission, health implications and treatment regimens of particular STIs.

Public health risks associated with food-borne parasites.

Parasites are important food‐borne pathogens. Their complex lifecycles, varied transmission routes, and prolonged periods between infection and symptoms mean that the public health burden and relative importance of different transmission routes are often difficult to assess. Furthermore, there are challenges in detection and diagnostics, and variations in reporting. A Europe‐focused ranking exercise, using multicriteria decision analysis, identified potentially food‐borne parasites of importance, and that are currently not routinely controlled in food. These are Cryptosporidium spp., Toxoplasma gondii and Echinococcus spp. Infection with these parasites in humans and animals, or their occurrence in food, is not notifiable in all Member States. This Opinion reviews current methods for detection, identification and tracing of these parasites in relevant foods, reviews literature on food‐borne pathways, examines information on their occurrence and persistence in foods, and investigates possible control measures along the food chain. The differences between these three parasites are substantial, but for all there is a paucity of well‐established, standardised, validated methods that can be applied across the range of relevant foods. Furthermore, the prolonged period between infection and clinical symptoms (from several days for Cryptosporidium to years for Echinococcus spp.) means that source attribution studies are very difficult. Nevertheless, our knowledge of the domestic animal lifecycle (involving dogs and livestock) for Echinoccocus granulosus means that this parasite is controllable. For Echinococcus multilocularis, for which the lifecycle involves wildlife (foxes and rodents), control would be expensive and complicated, but could be achieved in targeted areas with sufficient commitment and resources. Quantitative risk assessments have been described for Toxoplasma in meat. However, for T. gondii and Cryptosporidium as faecal contaminants, development of validated detection methods, including survival/infectivity assays and consensus molecular typing protocols, are required for the development of quantitative risk assessments and efficient control measures.

‘Heavy mountains’ for Chinese humanities and social science academics in the quest for world-class universities

ABSTRACTThis paper explores the impacts of research excellence evaluation entailed in global ranking exercises, a control strategy characteristic of new managerialism, on Chinese Humanities and Social Sciences (HSS) academics. The enquiry combines the Critical Incidents Technique (CIT) and internet-based discourse analysis, drawing on mass media texts and social media discussions. Our analysis identified three major dilemmas that may be created for Chinese HSS academics by their country’s aspirations for world-class universities embedded in its complicated socio-political context. First, a highly centralised system restrains academics’ autonomy to decide what to research and where to publish. Second, they are conflicted by the need to simultaneously attend to nationalistic interests and publish internationally. Third, ideological correctness is highly important. These findings invite us to reflect on the profound impact of university ranking exercises as a mode of university governance on HSS academics in many contexts.

Potential Interventions for Preventing Pesticide Self-Poisoning by Restricting Access Through Vendors in Sri Lanka.

In South Asia, up to one in five individuals who use pesticides for self-harm purchase them immediately prior to the event. From reviewing the literature we proposed four interventions: (a) farmer identification cards (ID); (b) prescriptions; (c) cooling-off periods; and (d) training pesticide vendors. We aimed to identify the most promising intervention. The study was conducted in Sri Lanka. We mapped stakeholders' interest and power in relation to each intervention, and followed this by a ranking exercise. Seven focus group discussions (FGDs) were conducted to assess facilitators and barriers to implementation. Vendor training was the most supported intervention, being ranked first by the stakeholders. The participants in the FGDs strongly supported training of vendors as it was seen to be easy to implement and was considered more convenient. Farmer IDs, prescriptions, and cooling-off periods were thought to have more barriers than facilitators and they were strongly opposed by end users (farmers and vendors), who would potentially block their implementation. Cost considerations for implementing the proposed intervention were not considered. Training vendors might be the most appropriate intervention to restrict sales of pesticides to people at risk of suicidal behavior. This requires field testing.

PGI44 - PATIENTS WITH NON-ALCOHOLIC STEATOHEPATITIS (NASH) REPORT POSITIVE EXPERIENCE AFTER PARTICIPATING IN AN ONLINE QUANTITATIVE PREFERENCE SURVEY

NASH is a chronic liver disease with severe complications. Limited patient preference data exist for NASH. We report patients’ experience with the completion of an online patient preference survey. The Patient Preference study was an online 30-minute quantitative survey consisting of 42 questions (mix of single- and multiple-choice) around patients’ medical journey, their attitudes and feelings around the disease and its management, symptoms, the disease’s impact on their personal professional lives, together with a ranking and adaptive choice-based conjoint (ACBC) exercise concerning preferences for hypothetical medical treatments with different attributes. To understand the cognitive burden of the survey, patients’ survey experience was also evaluated with a set of questions covering complexity, length, participant engagement, and user-friendliness. A total of 153 patients (USA: 50, Germany: 50, Canada: 36, UK: 17) participated from November 2017 to May 2018 and completed the survey experience questionnaire. Overall, 73% (range: 59%-84%) of participants found the questions easy to understand. The majority of them (75%; 59%-81%) found that the survey length was ‘fine’ and they could concentrate throughout; 21% (16%-35%) felt it was a ‘bit lengthy’. The survey was found to be interesting and engaging by 67% (59%-84%) of participants. The survey platform worked well for the majority (77%; 71%-92%); and 18% (8%-28%) felt it was ‘OK, but could be improved’. Health-technology assessment warrants patient-based evidence and personal experience, therefore it is vital to use robust, systematic approaches to collect this data during the drug-development process. The results demonstrate that the online survey was manageable and successful in identifying patient experiences and needs, and the ACBC methodology lends itself well to this sort of patient preferences research with numerous attributes to be tested. Elements related to length of survey need to be assessed going forward in order to improve respondent experience.

Financial Companies’ Failures: Early Warning Information from Systematic and Systemic Risk Measures

Following the 2007–2008 financial crisis, advanced risk measures were proposed with the specific aim of quantifying systemic risk, since the existing systematic (market) risk measures seemed inadequate to signal the collapse of an entire financial system. The paper aims at comparing the systemic risk measures and the earlier market risk measures regarding their predictive ability toward the failure of financial companies. Focusing on the 2007–2008 period and considering 28 large US financial companies (among which nine defaulted in the period), four systematic and four systemic risk measures are used to rank the companies according to their risk and to estimate their relationship with the company’s failure through a survival Cox model. We found that the two groups of risk measures achieve similar scores in the ranking exercise, and that both show a significant effect on the time-to-default of the financial institutions. This last result appears even stronger when the Cox model uses, as covariates, the risk measures evaluated one, three and six months before. Considering this last case, the most predictive risk measures about the default risk of financial institutions were the Expected Shortfall, the Value-at-Risk, the [Formula: see text] and the [Formula: see text]. We contribute to the literature in two ways. We provide a way to compare risk measures based on their predictive ability toward a situation, the company’s failure, which is the most catastrophic event for a company. The survival model approach allows to map each risk measure in terms of probability of default over a given time horizon. We note, finally, that although focused on the Great Recession in US, the analysis can be applied to different periods and countries.

The impact of sample type and procedural attributes on relative acceptability of different colorectal cancer screening regimens.

ObjectiveIn Australia and other countries, participation in colorectal cancer (CRC) screening using fecal occult blood testing is low. Previous research suggests that fecal sampling induces disgust, so approaches not involving feces may increase participation. This study aimed to determine population preferences for CRC screening tests that utilize different sample collections (stool, blood, and saliva) and the extent to which specific attributes (convenience, performance, and cost) impact this preference.Materials and methodsPeople aged 50–74 years completed a survey. Preference for screening for CRC through stool, blood, and saliva was judged through ranking of preference and attributes critical to preference and confirmed via a discrete choice experiment (DCE) where test attributes were described as varying by performance, cost, and sample type. Participants also completed a measure of aversion to sample type.ResultsA total of 1,282 people participated in the survey. The DCE and ranking exercise confirmed that all test attributes had a statistically significant impact on respondents’ preferences (P < 0.001). Blood and saliva were equally preferred over stool; however, test performance was the most influential attribute. In multivariable analyses, those who preferred blood to stool collection exhibited higher aversion to fecal (OR = 1.17; P ≤ 0.001) and saliva (OR = 1.06; P ≤ 0.05) sampling and perceived that they had less time for home sample collection (OR = 0.72, P ≤ 0.001). Those who preferred saliva to stool had higher aversion to fecal (OR = 1.15; P ≤ 0.001) and blood (OR = 1.06, P ≤ 0.01) sampling and less time for home sample collection (OR = 0.81, P ≤ 0.5).ConclusionAversion to sample type and perceived inconvenience of sample collection are significant drivers of screening preference. While blood and saliva sampling were the most preferred methods, test performance was the most important attribute of a screening test, regardless of sample type. Efforts to increase CRC screening participation should focus on a test, or combination of tests, that combines the attributes of high performance, low aversion, and convenience of use.

A Mixed Methods Approach to Understanding Antiretroviral Treatment Preferences: What Do Patients Really Want?

As the number of effective antiretroviral therapy (ART) options increases, there is greater opportunity to involve HIV patients in ART selection. To establish the parameters for a shared ART decision-making process, we sought to identify ART characteristics that are important to patients and understand considerations in ART selection from both patient and provider perspectives. Using a mixed-methods approach, 16 patients and 12 healthcare providers were interviewed, and ranking tasks were conducted with 26 patients to identify ART characteristics that are relevant for shared decision making. Interviews were coded using direct content analysis and complemented by a quantitative analysis of references to specific attributes. Ranking data were analyzed through count analysis. Qualitative analysis of patient interviews identified four major categories of ART characteristics that are pertinent to shared decision making: side effects (14/16 patients), administration characteristics (14/16 patients), dosing (13/16 patients), and long-term effects (12/16 patients). Other considerations included expectations for patient involvement in ART decision making, relationship with provider, and efficacy. The degree of concordance between patients and providers differed across categories. Ranking exercises demonstrated differences in the ways providers and patients prioritize specific side effects and food requirements. Expectations for patient involvement in the selection process also varied greatly among and between patients and providers. We identify specific attributes of ART that are decision-relevant to patients and providers, describe heterogeneity of their relative importance, and note variable perceptions of shared decision making. Individualizing ART will require greater investment in understanding an individual patient's preferences, including her/his desire to participate in shared decision making.

A discrete choice experiment on preferences of patients with rheumatoid arthritis regarding disease-modifying antirheumatic drugs: the identification, refinement, and selection of attributes and levels.

ObjectiveTo comprehensively describe the identification, refinement, and selection of attributes and levels for a discrete choice experiment (DCE) on preferences of patients with rheumatoid arthritis (RA) regarding disease-modifying antirheumatic drugs (DMARDs).MethodsA mixed-methods approach, consisting of three consecutive steps: a literature review, expert recommendations, and focus groups. Attributes and levels were identified by a scoping review and compiled into a list that was evaluated on its relevance by an expert panel. The list that resulted thereafter was used to inform three focus groups, including 23 patients with RA. New attributes and levels could be identified during the focus groups. Also, a ranking exercise was performed. The patients individually ranked the attributes (ie, the ones on the list and newly identified attributes) by relevance. The patients’ individual rankings were summed to derive a ranking at group level and make an a priori selection of the most relevant attributes. The group discussions were transcribed for qualitative analysis.ResultsNineteen attributes, each specified by two to seven levels, were identified by the scoping review. The expert recommendations resulted in the removal of one attribute. Furthermore, two new attributes and levels were identified and two attributes were split into two. One new attribute was identified during the focus groups. The results of the ranking exercise and qualitative analysis led to the refinement and selection of the following attributes: route of administration, frequency of administration, chance of efficacy, onset of action, risk of serious infections, risk of liver injury, and risk of cancer. Each attribute was specified by three levels.ConclusionThis study contributes to the limited literature on the development of attributes and levels. Future research should pay more attention to a comprehensive description of this process. It ensures transparency and thereby allows researchers to judge a DCE’s quality and generalizability.

Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholders

Background:Women with autoimmune rheumatic diseases (ARDs) find it difficult to get information and support with family planning, pregnancy, and early parenting. A systematic approach to prioritising research is required to accelerate development and evaluation of interventions to meet the complex needs of this population. Methods:A Nominal Group Technique (NGT) exercise was carried out with lay and professional stakeholders (n=29). Stakeholders were prepared for debate through presentation of available evidence. Stakeholders completed three tasks to develop, individually rank, and reach consensus on research priorities: Task 1 – mapping challenges and services using visual timelines; Task 2 - identifying research topics; Task 3 - individually ranking research topics in priority order. Results of the ranking exercise were fed back to the group for comment. Results:The main themes emerging from Task 1 were the need for provision of information, multi-disciplinary care, and social and peer support. In Task 2, 15 research topics and 58 sub-topics were identified around addressing the challenges and gaps in care identified during Task 1. In Task 3, a consensus was reached on the ten research topics that should be given the highest priority. These were individually ranked, resulting in the following order of priorities (from 1 – highest to 10 – lowest): 1. Shared decision-making early in the care pathway; 2. Pre-conception counseling; 3. Information about medication use during pregnancy/breastfeeding; 4. Personalised care planning; 5. Support for partners/family members; 6. Information about local support/disease specific issues; 7. Shared decision-making across the care pathway; 8. Peer-support; 9. Social inequalities in care, and; 10. Guidance on holistic/alternative therapies. Conclusions:This systematic approach to identification of research priorities from a multi-disciplinary and lay perspective indicated that activities should focus on development and evaluation of interventions that increase patient involvement in clinical decision-making, multi-disciplinary models of care, and timely provision of information.