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Inclusive design and usability testing: Involving an end-user in developing augmentative and alternative communication user interfaces using an open-source platform
Get PDFIntroduction Traditionally, augmentative and alternative communication (AAC) user interface development has been a time-intensive process requiring expertise in software development, often excluding people who use AAC. This paper demonstrates the involvement of an end user in the design and testing of prototype AAC user interfaces (UIs) developed using a platform called the Open Source Design and Programmer Interface (OS-DPI). Methods Micro-analysis of in-person conversation involving an adult with intellectual and developmental disabilities who uses AAC revealed several problems related to accessing his aided AAC device. The OS-DPI was used to co-design, develop, and test UIs aimed at addressing these observed problems. Results Researcher efforts to independently design and develop novel UIs that addressed the problems identified in research were ineffective. Inclusive design practices led to a shared determination of required functionality and co-design of UIs with reported improvements for access and communication. Conclusions This paper demonstrates the potential of the OS-DPI for the co-design and development of AAC UIs to address unique needs
Improving breast cancer treatments using pharmacomicrobiomics.
Get PDFTamoxifen is the mainstay treatment for estrogen-positive breast cancer for over half a century. However, a significant proportion of patients experience disease recurrence due to treatment failure attributed to various factors, including disease pathology, genetics, and drug metabolism. Alam et al. introduce gut microbiota as a key factor influencing tamoxifen pharmacokinetics (Y. Alam, S. Hakopian, L. Ortiz de Ora, I. Tamburini, et al., mBio 16:e01679-24, 2024, https://doi.org/10.1128/mbio.01679-24). The authors present compelling evidence that functional differences in the gut microbiota, specifically the bacterial enzyme β-glucuronidase, leads to inter-individual variability in systemic exposure of tamoxifen, affecting drug efficacy. This study provides novel insights into the impact of the gut microbiota on tamoxifen pharmacokinetics, the latest example of how pharmacomicrobiomics, or the study of drug-microbe interactions, can enhance precision medicine for numerous diseases
Exact Inference for Random Effects Meta-Analyses for Small, Sparse Data
Get PDFMeta-analysis aggregates information across related studies to provide more reliable statistical inference and has been a vital tool for assessing the safety and efficacy of many high-profile pharmaceutical products. A key challenge in conducting a meta-analysis is that the number of related studies is typically small. Applying classical methods that are asymptotic in the number of studies can compromise the validity of inference, particularly when heterogeneity across studies is present. Moreover, serious adverse events are often rare and can result in one or more studies with no events in at least one study arm. Practitioners remove studies in which no events have occurred in one or both arms or apply arbitrary continuity corrections (e.g., adding one event to arms with zero events) to stabilize or define effect estimates in such settings, which can further invalidate subsequent inference. To address these significant practical issues, we introduce an exact inference method for random effects meta-analysis of a treatment effect in the two-sample setting with rare events, which we coin “XRRmeta”. In contrast to existing methods, XRRmeta provides valid inference for meta-analysis in the presence of between-study heterogeneity and when the event rates, number of studies, and/or the within-study sample sizes are small. Extensive numerical studies indicate that XRRmeta does not yield overly conservative inference. We apply our proposed method to two real-data examples using our open-source R package
Sleep Quality, Nutritional Habits, and Physical Activity in Pediatric Cancer Survivors: A Dyadic Analysis Approach
Get PDFBackground/Objectives: Sleep disturbances are prevalent among pediatric cancer survivors (PCSs) and their caregivers, often leading to poorer dietary choices and reduced physical activity. Additionally, the sleep quality and health behaviors of parents and children can affect each other. This study examined bi-directional associations between PCSs and their parents’ sleep quality and health-related behaviors. Methods: 127 parent–child dyads enrolled in a behavioral intervention for pediatric cancer survivors (Mage = 11.04; 53.2% female) and their families completed the Patient Sleep Quality Inventory (PSQI) and USDA Parent or Child Food and Activity Questionnaire (FAQ). Two actor–partner interdependence models, using multi-level modeling and adjusting for relevant confounds, estimated the bidirectional associations between the parent–child dyad’s sleep quality and composite food and physical activity quality. Results: After controlling for partner BMI and actor and partner age, the effect of children’s PSQI scores on parent’s FAQ scores was statistically significant (β = −0.23, p = 0.036). Poorer sleep quality in children was associated with worse physical activity and dietary behaviors in parents. Second, after adjusting for race, a significant partner effect for parents’ FAQ scores on children’s PSQI scores was shown—greater parental food and physical activity quality was associated with better sleep quality in PCS (β = −0.20, p = 0.041). Conclusions: Better food and activity quality for parents is linked to improved sleep quality for children, while children’s poor sleep quality is associated with lower food and activity quality in parents. The findings highlight the prospective value of systems-focused clinical interventions to manage sleep quality and promote positive health behaviors among PCS
Image Reuse Hypothetical
Get PDFThis hypothetical was created by Caroline Mort for the "Copyright Basics and Fair Use Deep Dive" workshop at Portland State University on Friday, January 31, 2025. This workshop was hosted by the Western Copyright Alliance and Library Copyright Institute
Changes in Grocery Shopping Behavior among Low-Income Households during the COVID-19 Pandemic
Get PDFObjective: The Supplemental Nutrition Assistance Program (SNAP) Online Purchasing Pilot (OPP) authorized the use of SNAP benefits online in Maryland in May 2020. We assessed shopping behavior and intentions associated with uptake and intended future use of online grocery shopping during and after COVID-19 among SNAP-eligible households. Design: In this mixed-methods study, participants completed a survey on online grocery shopping, and a purposefully sampled subset participated in focus groups or in-depth interviews between November 2020 and March 2021. Setting: Predominantly urban households in Maryland Participants: Primary shoppers of SNAP-eligible households with young children (n=310) Results: Most participants reported first shopping for groceries online after the OPP was implemented (57%). Families who purchased groceries in-store less frequently were less likely to report ever buying groceries online (RR: 0.66, 95% CI: 0.46, 0.93) compared to weekly grocery shoppers. Shoppers who intended to purchase more groceries online in the next 6-months were more likely to have online shopping experience, although this differed by timing of online grocery service adoption. Participants reported more negative attitudes toward in-store grocery shopping during the pandemic than prior to its onset, and cited COVID-19 as a motivator for ordering groceries online in focus groups. Most participants who had shopped online planned to continue after the pandemic (79%). Conclusions: Most participants who shopped online started during the COVID-19 pandemic and considered the pandemic a key motivator. Findings suggest that low-income households will continue to shop online, affirming the need for policies that promote equitable access to healthy food online
Who is living near different types of US Superfund sites: A latent class analysis considering site contaminant profiles
Get PDFBackground: Millions of people in the United States live near Superfund sites and may be exposed to hazardous chemicals from those sites. However, there is limited research on chemicals present at sites and the demographics of nearby communities. We aimed to identify subgroups of Superfund sites with similar contaminant profiles and evaluate whether sociodemographic characteristics vary by type of site. Methods: We used US Environmental Protection Agency Superfund data to identify sites active in the year 2000. Census tract centroids located within 3 miles of every Superfund site were identified and a weighted average of census tract-level sociodemographics using the 2000 US Census was calculated. Superfund sites with similar contaminant profiles were identified using latent class analysis. We compared the median sociodemographic characteristics, overall and by contaminant latent class, with those of the overall 2000 US Census. Results: We identified seven latent classes based on 12 contaminant categories from 1332 Superfund sites active in 2000. Overall, there were few differences in sociodemographics observed by the presence of any Superfund site compared with the overall US Census. After stratifying by contaminant profile, we observed evidence of disparities for two classes of sites, defined by (1) high diversity of chemical exposure and lumber industry and (2) batteries and metals, which were more likely to have higher hazard scores and to be near communities with higher proportions of non-White individuals, lower socioeconomic status, and higher social vulnerability. Conclusion: Disadvantaged communities, with higher social vulnerability, were more likely to be near certain Superfund sites with higher hazard scores
CHAT-S study protocol: A randomized controlled trial of a health insurance literacy education program for young adult cancer survivors
Get PDFBackground: Health insurance education could mitigate financial toxicity experienced by young adult (YA) cancer survivors by increasing confidence when navigating cancer care costs. This paper describes the protocol in a randomized controlled trial (RCT) to test a virtual patient navigation program designed to help YA cancer survivors understand their health insurance. Methods: This is a two-arm, multi-site (Huntsman Cancer Institute, Intermountain Health) RCT wherein intervention participants receive four sessions with a patient navigator and a booklet on insurance; usual care receives the booklet. We will enroll 300 YA cancer survivors (n = 200 intervention; n = 100 usual care) diagnosed with breast, testicular, lymphoma, sarcoma, colorectal, melanoma, or thyroid cancer between the ages of 26 and 39, who have completed treatment in the past two years. All participants will complete three surveys: enrollment, 6 months, and 12 months; medical records/insurance claims data will be collected out to 18-month follow-up. The primary outcomes include improvement in health insurance literacy and financial toxicity at 6 months. Secondary outcomes include adherence to cancer surveillance guidelines at 18 months. We will also conduct cost-effectiveness and budget impact analyses. Discussion: Anticipated results from this trial could identify key information that YA cancer survivors need to improve health insurance literacy and survivorship care. Trial registration: ClinicalTrials.gov identifier: NCT05829070. Registered on April 25, 2023
Tradición y Vanguardia: Bridging Contemporary and Traditional Art in Barcelona
No full textIn this project, I investigated how Modernist artists in Catalonia (particularly Barcelona) engage with and reinterpret traditional artistic elements. The project involved in-depth research, interviews, and documentation of artworks and exhibitions that exemplify the fusion of tradition and modernity. I spent significant time at the Museum of Contemporary Art of Barcelona and other relevant cultural institutions, examining their collections and engaging with the local art community
Identifying Barriers to Being Offered and Accepting a Telehealth Visit for Cancer Care: Unpacking the Multi‐Levels of Documented Racial Disparities in Telehealth Use
Get PDFOBJECTIVE: To evaluate patient- and area-level factors in relation to telehealth visit use in cancer care. STUDY SETTING AND DESIGN: We surveyed a cohort of adults with an upcoming healthcare visit related to their cancer treatment at two academic medical centers (one in central North Carolina and one in southeast Michigan) and their community affiliates. Black adults and those with a scheduled telehealth visit were purposively oversampled during recruitment. We linked respondent residential addresses to area-level measures, including broadband access. The two patient-reported outcomes of interest were (1) whether a choice in visit type (virtual or in-person) was offered and (2) scheduled visit type. DATA SOURCES AND ANALYTIC SAMPLE: We assembled a cohort of 773 adults (response rate = 15%). After excluding nonrecall for being offered a choice, the analytic sample was 725 adults. PRINCIPAL FINDINGS: The sample was 46% aged < 65 years, 42% Black, and 67% women. Black respondents were less likely than non-Black respondents to be offered a choice, 15% versus 23%, prevalence difference (PD) and 95% CI = (-8.7%, CI: -14.4, -3.0) and if offered a choice, less likely to accept a telehealth visit (20% vs. 67%; PD = -47.0%, CI: -62.0, -32.0). Compared to men, women had a lower frequency of visit choice (16% vs. 27%; PD = -10.9%. CI: -17.4, -4.4) and accepted telehealth visits (42% vs. 63%; PD = -20.8%, CI: -36.8, -4.7). Respondents who expressed technology-related worries were less likely to accept a telehealth visit. Lower area-level technology access (e.g., broadband ownership) and higher poverty were nonsignificantly associated with less offering and less scheduling of telehealth visits. CONCLUSIONS: Interventions to improve access to telehealth in cancer care and mitigate structural inequities (namely racism and sexism) should consider patient- and area-level barriers to being offered a choice in visit type and the ability to accept a telehealth visit