Nives Quaye

Purpose: The study aimed to identify factors influencing family-building perspectives among adults with sickle cell disease (SCD) overall and by sex, and to examine attitudes toward discussing SCD genetic transmission with partners and doctors by sex and relationship status. Methods: We conducted a secondary analysis of survey data from 91 adults with SCD (aged 21–39) receiving care at The Ohio State University Wexner Medical Center. Participants completed a survey assessing their sociodemographic information, factors influencing family-building perspectives, and attitudes regarding SCD genetic transmission. Inductive content analysis identified themes in open-ended survey responses. Descriptive statistics summarized quantitative data, and chi-square tests analyzed differences by sex and relationship status. Results: Five themes emerged: 1) concerns about personal health and pregnancy, reported primarily by females; 2) lack of resources (i.e., finances and familial support); 3) concerns about genetic transmission; 4) desire for a large family; and 5) indifference or low desire for children. Most participants reported being comfortable discussing SCD with partners (86%) and doctors (89%), with no differences by sex or relationship status. Among dating/partnered individuals, 65% reported their partner did not know their sickle cell trait status. Forty-five percent of participants received SCD genetic counseling, and 12% of those reported it influenced their family-building perspectives. Conclusions: Family-building perspectives in adults with SCD may be influenced by multiple factors such as personal health, lack of resources, and concerns for genetic transmission. Further research to understand how to optimize counseling practices is crucial to allow individuals with SCD to achieve their family-building goals.

Adults with sickle cell disease (SCD) experience fragmented access to primary and preventive care, which leads to poor adherence to general and SCD‑specific clinical practice guidelines. To address this gap, we implemented an embedded primary care model where a board‑certified internist/pediatric primary care provider (PCP) was embedded as a full member of the adult SCD care team, attending operational and educational meetings and practicing alongside hematologists in a comprehensive SCD clinic. Our primary aim was to test the hypothesis that an embedded primary care model was associated with improved guideline‑based preventive care and changes in acute healthcare utilization (e.g., emergency room visits and hospitalizations). We conducted a retrospective cohort study of adults with SCD seen at a single tertiary care center between July 2020 and June 2025. Of the 388 adults with SCD seen at the center, 174 received care from the embedded PCP. Patients in the embedded PCP model demonstrated significantly higher adherence to general preventive care including cervical cancer screening ((Odds Ratio) OR: 4.49; 95% (Confidence Interval) CI: 2.46, 8.23), depression screening (OR: 7.97; 95% CI: 1.78, 35.69), and diphtheria-tetanus-pertussis (Tdap) immunization (OR: 2.88; 95% CI:1.72, 4.84), and SCD‑specific guidelines, including annual eye examinations (OR: 2.59; 95% CI: 1.66, 4.04), pneumococcal immunization (OR: 3.58; 95% CI: 2.16, 5.92), urine protein screening (OR: 3.36; 95% CI: 1.89, 6.00), and ACE inhibitor/ARB use for microalbuminuria (OR: 9.37; 95% CI: 3.11, 28.23). Among patients who saw the embedded PCP, patients had significantly more annual outpatient visits (post-PCP: 4.2 vs pre-PCP: 2.7, p < 0.0001) and, while insignificant, fewer annual inpatient admissions (post-PCP: 1.4 vs pre-PCP: 1.9, p = 0.4869). Embedding a PCP within the adult SCD care team was associated with improved guideline‑based preventive care and more annual outpatient visits, which was consistent with more coordinated, outpatient‑focused management.

Background: While mobile health (mHealth) apps have been made for various diseases, including sickle cell disease (SCD), most focus on a single purpose. SCD is a chronic disease that requires knowledge of the disease, self-management, and adherence to treatment plans. While mHealth apps have been made with single features for SCD, there is limited understanding of using an mHealth app with a more comprehensive set of features that could engage adults with SCD, depending on what features they prefer and need to engage and empower them in living with their disease. Objective: We evaluated the usage of an mHealth app with various features, including pain tracking, quizzes for patient-facing guidelines, pain and asthma action plans, and goal setting. Methods: Adults with SCD were enrolled at 2 sickle cell centers between 2018 and 2022 as part of a 6-month feasibility randomized controlled trial with participants completing surveys at baseline and 6 months. Participants were randomized into receiving either an mHealth app and booklet with patient-facing guidelines or a booklet with the guidelines alone. The mHealth app comprised web pages with patient-facing guideline material and a Research Electronic Data Capture (REDCap) project. The REDCap project included a personal profile, a pain tracker, goal setting, quizzes about the guidelines, and pain or asthma action plans. The REDCap project also included the ability to send daily text messages at a time they chose, which contained a message they could create and a link to their profile. Outcomes included SCD-specific knowledge and acute health care utilization (emergency room visits and hospitalizations). We evaluated the usage of these different features and relationships with baseline variables, each other, and study outcomes. Results: Approximately 75% (50/67) of the enrolled and randomized participants completed all the study components, and 100% (26/26) of the participants who were randomized to the mHealth app arm and completed the study used the mHealth app. Further, 15/30 (50%) participants used multiple features. Baseline sickle cell knowledge and female gender were associated with more usage of pain diary (P=.04) and mission (P=.046) features, respectively. While not significant, mission completion was associated with lower hospitalizations (P=.06). Conclusions: Adults with SCD engaged differently with an mHealth app with multiple features. As this study was not focused on one part of our app, engagement with features in this app was entirely patient-driven, which may demonstrate the expected real-world use of an mHealth app in this population. A multipurpose app can help engage participants in self-management strategies through different features and potentially improve outcomes.

Background: Wellness champion networks are a best practice strategy to promote and sustain a culture of well-being in organizations and institutions of higher education. Aim: The purpose of this quality improvement evaluation was to determine program effectiveness and areas of opportunity for a university wellness champion program. Methods: An anonymous survey was sent to 700 wellness champions, the Buckeye Wellness Innovators (BWIs), to assess program components, identify areas of opportunity, and gather participant feedback. Results: A total of 202 BWIs (28.8%) responded to the survey. Seventy-five percent reported at least moderate engagement in the role. There was a strong desire among respondents to contribute to the university’s wellness initiative. Areas of opportunity include further colleague engagement in wellness services and programs, enhanced communication from program facilitators, and continued and increased support for the wellness champion role. Conclusions: Feedback on the program was positive overall. Several areas of opportunity for program improvement were identified. Wellness champions are an effective evidence-based strategy to support a culture of wellness in institutions of higher education and their feedback is important for program quality improvement.