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Objective The Bayley Scales of Infant and Toddler Development- 4th Edition (Bayley-4) and Vineland Adaptive Behavior Scales – 3rd Edition (Vineland-3) are outcome measures often considered as primary endpoints in clinical trials for Angelman syndrome (AS). We explored barriers encountered when administering these instruments to individuals with AS and associated guidance for their use in trials and research studies. Methods We interviewed nine clinicians who have administered the Bayley-4 and/or the Vineland-3 to individuals with AS and analyzed their transcripts using a quasi-deductive analysis approach. Results Barriers to administering the Bayley-4 included participant’s lack of interest, overexcitement, emotional impact on caregiver, the mental workload of administering the Bayley-4, and environmental factors (e.g., administration setting). Barriers to administering the Vineland-3 included determining the most appropriate start point, emotional impact on caregiver, distractions, conflicting answers from two caregivers, and the mental workload of administering the Vineland-3. Participants provided potential solutions to each barrier. Lastly, we identified overarching item-level concerns for both the Bayley-4 (i.e., administration challenges, items not aligned with abilities) and the Vineland-3 (i.e., misalignment of assessment criteria and condition characteristics, limitations in observation and contextual understanding, requires specialized training). Conclusion Clinical trials often rely on the Bayley-4 and Vineland-3 assessments as outcome measures, yet our identified barriers threaten their validity. The associated solutions provide a path forward for improving administration of the Bayley-4 and Vineland-3 in clinical practice, research, and future trials focused on individuals with AS and other intellectual and developmental disabilities.

Background There has been increased attention to the need for, and the positive impact of, engaged or participatory science in recent years. Implementation scientists have an opportunity to leverage and contribute to engagement science (ES) through the systematic integration of engagement into implementation science (IS). The purpose of this study was to gather information from researchers and others to develop a prioritized list of research needs and opportunities at the intersection of IS and ES. Methods We conducted three Zoom-based focus groups with 20 researchers to generate a list of unmet needs, barriers, and to describe normative themes about use of ES and IS. Then a panel of nine experts in IS and/or engagement ranked the needs and barriers using a survey and met via a Zoom meeting to discuss and generate research opportunities and questions, with reference to the focus group outputs. Results Respondents and experts concurred on the importance of engagement in IS. Focus group participants reported 28 needs and barriers under the themes of 1) need for best practice guidance related to engagement processes and outcomes and 2) structural barriers to integrating ES in IS. The expert panel prioritized six structural barriers and four barriers related to generating best practice guidance, with corresponding recommendations on research opportunities. Example research opportunities related to engagement processes included: define “successful” engagement in IS contexts; adapt engagement tools and best practices from other disciplines into IS. Example research opportunities related to outcomes included: assess the impact of engagement on IS outcomes; examine engagement practices that lead to optimal engaged research. Example research opportunities related to structural barriers included: leverage research evidence to create structural changes needed to expand support for engaged IS; examine factors that influence institutional buy-in of engagement in IS. Conclusions Research needs exist that relate to engagement processes, outcomes, and structural barriers, even for scientists who value engaged research. Expert panelists recommended sequential and reinforcing research opportunities that implementation and engagement scientists can tackle together to advance both fields and health equity. Future work should assess insights from broader invested parties, particularly patients and community members.

Background Individuals with Angelman syndrome (AS) often experience profound communication impairment and intellectual disability, and as a result, are often unable to self-report on their experiences of emotional distress, including experiences of anxiety. However, existing measures of anxiety primarily depend on verbal descriptions of internal states, making them unsuitable tools for assessing the nature and severity of distress through observer-report for this population. To address this gap, we developed the Measure of Observable Outcomes of Distress in Angelman Syndrome (MOOD-AS), a novel observer-reported outcome (ObsRO) instrument built through a rigorous, caregiver-centered qualitative process focused on observable expressions of distress. Methodology Following FDA and ISPOR guidance for clinical outcome assessment development, we conducted concept elicitation interviews with caregivers in the United States and the Netherlands, drafted an initial item pool, mapped items against existing anxiety measures, and performed cognitive interviews to refine the instrument. Concept elicitation interviews were analyzed using content analysis, with saturation of concept assessed quantitatively. Cognitive interviews focused on evaluating item clarity, relevance, and usability. Results Caregivers identified 120 and 119 unique observable behaviors and situations in the U.S. ( n  = 17) and Netherlands ( n  = 8) sample. Saturation of concept was achieved. Mapping to nine existing anxiety measures revealed substantial gaps in coverage of caregiver-observable behaviors. Cognitive interviews ( N  = 9) confirmed strong item clarity and relevance, resulting in minor refinements to instructions, severity ratings, and caregiver impact response options. The final MOOD-AS consists of 71 caregiver-centered items assessing observable distress and anxiety-related behaviors. Psychometric properties will be assessed in the next phase of data collection. Conclusions The MOOD-AS provides a rigorously developed ObsRO item set with strong qualitative evidence for content validity. Further psychometric evaluation will establish its measurement properties. Its development highlights the importance of systematically integrating caregiver observations when self-report is not feasible and offers a model for future outcome measure development in rare and nonverbal populations.

The conversation strategies patients and clinicians use are important in determining patient satisfaction and adherence, and health outcomes following patient education—yet most studies are rife with surveys and interviews which often fail to account for real-time interaction. Conversation analysis (CA) is a powerful but underused sociological and linguistic technique aimed at understanding how interaction is accomplished in real-time. In the current manuscript, we provide a primer to CA in an effort to make the technique accessible to patient education researchers including; The history of CA, identifying and collecting data, transcription conventions, data analysis, and presenting the findings. Ultimately, this article provides an easily digestible demonstration of this analytic technique.

Many researchers presume team-based qualitative research improves rigor, deepens meaning, and reduces bias by integrating multiple perspectives. Yet, researchers seldom challenge this belief. In the current paper, I critique these assumptions arising from power imbalances, pressure to align, and bargaining within research teams. Drawing from qualitative methodology, psychology, and epistemic justice, I argue that group coding can limit meaning-making, discourage dissent, and reinforce prevailing perspectives. Examining team dynamics reveals how forced consensus weakens trustworthiness. Instead of treating coder consensus as rigor, a reflexive approach prioritizing transparency, structured debate, and integrity is needed. I propose strategies for reducing bias, including team structures, audit trails, and clear steps for resolving interpretive differences.

Multiple myeloma (MM) is an incurable cancer characterized by abnormal plasma cells in the bone marrow, resulting in increased risk of infection. Autologous stem cell transplant (ASCT) is the most effective treatment for MM, but successful transplant requires the patient and caregiver to learn and independently implement medical tasks. The Ready for Transplant (R4T) ethnographic-based formative evaluation includes evaluation of ongoing patient education and the addition of novel supplemental educational videos that patients can review before in-person transplant education. To evaluate R4T, a formative evaluation informed by utilization-orientated evaluation theories, including over 150 hours of ethnographic observation of nurse/patient education (N = 70), plus retrospective and prospective patient (N = 35) and clinician interviews (N = 7) was conducted over 18 months. Through thematic analysis, barriers and facilitators of the patient’s ability to process education surrounding ASCT were identified. Barriers included anxiety surrounding what to expect in ASCT, anxiety surrounding what to expect at the education visit, overwhelming volume of information, lack of medical expertise, and disengaged patients, while facilitators included large social networks willing to help and clinician adjusting script to meet unique needs of the patient. This manuscript represents an iterative method for improving on education that people with MM receive surrounding ASCT. Ultimately, the supplemental video-based education was created to address modifiable social and psychological factors by providing generalized information that could then be tailored during in-person meetings to meet each patients’ individual needs.

In the current study, we sought to examine whether patients incorporate the identity of a patient receiving autologous stem cell transplant (ASCT) for multiple myeloma (MM) into their daily lives. Multiple myeloma patients receive education before initiating the ASCT treatment process. In this ethnographic study using interpretative phenomenological analysis, we observed pretransplant education visits with 30 MM patients, followed by semistructured interviews in their hospital rooms during transplant. The experience of receiving ASCT for MM required effort by patients to not only maintain their past identity but also establish a new patient identity. Reconciling these 2 identities required deliberate and emotionally draining effort from the patient. Results were organized into 2 overarching themes of social relationships and aesthetics with subthemes for each. Understanding methods MM patients who are receiving ASCT use to negotiate normalcy during treatment may be helpful for developing interventions for alleviating distress during this difficult time.

BackgroundAfrican-Americans rank last among all racial groups for age-adjusted colorectal cancer mortality, 5-year survival rates, and rates of screening. Access to care does not fully explain racial disparities in rates of CRC and mortality. Sociocultural attitudes can predict probabilities of CRC screening.AimsThe objective of this study is to identify factors that influence colorectal cancer screening behavior in African-American men.MethodsSemi-structured interviews were conducted among 32 African-American men. Transcripts were analyzed using MAXQDA software. We then conducted a cross-sectional survey of 103 African-American men, using previously validated scales related to colorectal cancer screening and determinants. Data were analyzed with SPSS.ResultsIn the interview phase, beliefs relating to masculinity emerged as factors that hindered participation in screening. Overwhelmingly, participants felt that having an in-depth discussion about colorectal cancer with their provider was critical to enabling them to get screened. The survey phase demonstrated that most participants had poor colorectal cancer knowledge, as only 16% passed the knowledge test. Forty-eight percentage agreed that their provider did not recommend getting screened. Those who had been previously screened for colorectal cancer scored higher in total and on all subsets of the masculinity index than those who had not (p < .01). The most persuasive messages were those related to themes of masculinity.ConclusionThis study provides a novel sociocultural perspective about colorectal cancer screening in African-American men. Our findings highlight the importance of family, masculinity, and community when promoting colorectal cancer screening to this population.

Electronic patient portals (PP) allow for targeted and efficient research recruitment. We assessed pre- and postnatal women's recruitment methods preferences, focusing on PP. We conducted 4 in-person focus groups with new and expecting mothers. Participants reported demographics, health status, and comfort with technology including PP. We used descriptive statistics to characterize quantitative data and a quasi-deductive approach to analyze qualitative data. Participants (  = 32) were an average age of 31.9 years, mostly White (65.6%), married (90.6%), and had a 4-year degree or higher (71.9%). Although they preferred PP for research recruitment over other methods (eg, in-person, physical mail), participants suggested potential barriers, including high message frequency, messages feeling like spam, and concerns about confidentiality. Participants suggested solutions, including enhancing autonomy through opt-in methods; integrating their healthcare provider's feedback; sending personal and relevant messages; and assuring their PP data are confidential. PPs are a promising recruitment method for pre- and postnatal women including for maternal-child health studies. To ensure engagement with the method, researchers must respond to known patient concerns and incorporate their feedback into future efforts. Although PP were generally viewed as an acceptable recruitment method, researchers should be mindful of barriers that may limit its reach and effectiveness.

Complementary and alternative medicine (CAM), often pursued independent of prescribing clinicians, may interact with traditional treatments, yet CAM use has not been well characterized among people living with HIV (PLWH) in the combined antiretroviral therapy (ART) era. We analyzed data from the Veterans Aging Cohort Study (October 2012–April 2015) to characterize CAM use in PLWH on ART. CAM users were more likely to have lived longer with HIV, report more bothersome symptoms, be prescribed more benzodiazepines and opioids, and consume less nicotine and alcohol. Given its high prevalence, clinicians should routinely assess for CAM use and its impact among PLWH.