To make informed choices in health-related discrete choice experiments (DCEs), respondents need to understand the choice scenarios, alternatives, attributes and attribute levels presented to them. Respondent populations are often highly diverse in knowledge and experience, leading to varying informational needs that make it challenging to design educational materials that sufficiently inform all respondents without disengaging others. At present, however, structured guidance on developing DCE educational materials is lacking. Drawing on the instructional design literature, this paper investigates whether theory-driven adaptations to educational materials improve respondent comprehension and engagement in health-related DCEs. Informed by three focus groups on DCE informational needs, we identified four design principles from the instructional design literature relevant to DCE educational materials: whole-task instruction, making inferences explicit, adapting information to respondents’ prior knowledge and embedding self-check questions with corrective feedback. Educational materials for three existing DCEs (influenza vaccination, colorectal cancer screening and rheumatoid arthritis prevention) were redesigned to incorporate these principles. Panel respondents (N = 1754) were randomized to receive either the original or the adapted educational materials, and effects on comprehension, engagement, internal validity and choice consistency were assessed. Adapted materials increased time spent on educational content and were associated with small improvements in selected comprehension outcomes, though effects were often not statistically significant against the co-created comparator. Self-check questions revealed considerable comprehension gaps regardless of condition, underscoring that co-creation and pre-testing alone do not guarantee sufficient respondent comprehension. Educational materials also emerged as a meaningful source of selective dropout in all surveys, predominantly among respondents with lower education levels, posing a risk to sample representativeness that warrants attention in future research. Adapting DCE educational materials based on educational theory and instructional design principles offers a promising approach to improving respondent engagement and understanding. To enable cumulative learning, we further encourage researchers to report comprehension outcomes and publish educational materials as supplementary materials.
There is an unmet need for effective and well-tolerated oral formulations of glucagon-like peptide 1 receptor agonists for the management of type 2 diabetes. Orforglipron and oral semaglutide are two oral glucagon-like peptide 1 receptor agonists evaluated in the ACHIEVE-3 clinical trial (NCT06045221). These novel treatments have the means to achieve clinically meaningful glycemic control and weight reduction, which may result in substantial positive changes in patients’ daily lives. The objective of this study was to conduct exit interviews following the ACHIEVE-3 trial to characterize positive treatment experiences and outcomes, beyond glycated hemoglobin and weight reduction, reported by patients living with type 2 diabetes who received oral glucagon-like peptide 1 receptor agonist-based treatments. Qualitative interviews were conducted across ten clinical sites within the USA with patients who had enrolled in ACHIEVE-3 and completed at least 3 months of treatment. Interviews were conducted in English or Spanish, audio-recorded, and transcribed. Transcripts were analyzed to identify and categorize positive treatment benefits reported during the interviews. Descriptive statistics were used to characterize the sample. Sixty patients completed the qualitative exit interviews. Patients had a mean age of 59.1 years (standard deviation [SD] = 10.3), and almost half were female (n = 28, 46.7
Acute leukaemia is an aggressive rapidly-progressing form of blood cancer that often requires intensive treatment, placing substantial demands on informal carers. In this study, we aimed to explore the lived experience of informal carers of adults with acute leukaemia, including the impact of caregiving on their quality of life and their role in treatment decisions, across six countries. We conducted a multinational mixed-methods study using semi-structured interviews with 60 informal carers of adults with acute leukaemia in the UK (n = 20), USA (n = 20), France (n = 5), Germany (n = 5), Italy (n = 5) and Spain (n = 5). Demographic data and data from the administration of Family Reported Outcome Measure (FROM-16) were collected prior to the interviews. Interview transcripts were analysed using reflexive thematic analysis. Informal carers reported a substantial burden: 59
Consensus has not been established on measures of illness severity and burden for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is characterized by a wide range of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment. A scoping review was conducted to systematically evaluate the measurement of illness severity and burden in individuals with ME/CFS. A literature search was conducted following PRISMA-ScR guidelines across five academic databases and one patient-organization-led website (with no restrictions on publication date; restricted to English language studies, and excluding review articles). Records were imported into Covidence, a systematic and scoping review data management tool, with studies retained if they evaluated an ME/CFS population and explicitly measured illness severity or illness burden. Information from each source was extracted and relevant measures were evaluated. From the reviewed literature, 190 full-text articles met the final inclusion criteria and were retained for analysis. The most frequently utilized tools for evaluating illness severity and burden in individuals with ME/CFS were the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) and the Sickness Impact Profile (SIP). Additional prominent instruments identified across the literature include disease-specific measures such as the DePaul Symptom Questionnaire (DSQ) and generic health-related quality of life indices like the EuroQoL 5-Dimension (EQ-5D-5L). Significant discrepancies persist in how illness severity and illness burden are operationalized in ME/CFS research. The reliance on generic instruments often obscures core symptom domains like post-exertional malaise (PEM), while inconsistent standards limit cross-comparability. Establishing standardized, disease-specifici illness metrics is critical to accurately capturing the true burden of illness and advancing rigorous clinical research.
This study aimed to quantify the preferences and trade-offs of Chinese patients with acute myeloid leukemia (AML), primary caregivers, and hematologists regarding key treatment attributes, and to explore heterogeneity in preferences across and within groups. A discrete choice experiment with five attributes (complete remission rate, quality of life during treatment, long-term side effects, route of administration, and monthly treatment cost) was conducted. Between November 2025 and February 2026, patients with AML and their caregivers were recruited from two tertiary hospitals in Harbin, China; hematologists were recruited via an online survey. Preference weights were estimated using conditional logit models. Relative attribute importance and willingness to pay (WTP) were calculated, and preference heterogeneity was examined using a hierarchical Bayes model. In total, 109 patients, 112 caregivers, and 85 hematologists were included. All three groups ranked complete remission rate as the most important attribute. Hematologists' WTP for an improvement in remission rate from 65
