Developing a community-led rare disease ELSI research agenda.

Background: Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.

Methods: This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease.

Let's Talk About Antibiotics: a randomised trial of two interventions to reduce antibiotic misuse.

Background: Children with acute respiratory tract infections (ARTIs) receive ≈11.4 million unnecessary antibiotic prescriptions annually. A noted contributor is inadequate parent-clinician communication, however, efforts to reduce overprescribing have only indirectly targeted communication or been impractical.

Demographic Characteristics Among Members of Patient Family Advisory Councils at a Pediatric Health System.

Patient Family Advisory Councils (PFACs) are groups of patients, families, and clinical health system leaders collaborating to improve the quality, safety, and experience of care. Best practices encourage PFAC membership to reflect the diversity of the communities served. A cross-sectional survey was conducted from September 2019 to January 2020 collecting demographic characteristics of the members of a pediatric health system's 17 PFACs.

A pilot intervention combining assessment and feedback with communication training and behavioral nudges to increase HPV vaccine uptake.

Human papillomavirus (HPV) causes >40,000 cancer diagnoses each year, yet vaccination rates remain low because widespread implementation of strategies to increase vaccinations has not occurred. Behavioral nudges have demonstrated efficacy in improving uptake of desired behaviors in health care settings but have not been tested for increasing HPV vaccinations. We assessed the impact of an intervention combining behavioral nudges with other proven strategies (i.

Differential mechanisms of change in motivational interviewing versus health education for smoking cessation induction.

To determine if Motivational Interviewing (MI) versus health education (HE) elicited different types of client language and whether these differences were associated with outcomes in a randomized clinical trial (RCT) for cessation induction among people who smoke with low motivation to quit. A secondary data analysis was conducted using data from the MI and HE arms of a trial in which people who smoke ( = 202) with low desire to quit were randomly assigned to four sessions of MI, HE or brief advice. Mediation analyses examined two types of client language: change talk (CT) and a novel form of client speech called "learning talk" (LT).

Reductions in Parent Interest in Receiving Antibiotics following a 90-Second Video Intervention in Outpatient Pediatric Clinics.

Objectives: To assess the impact of a 90-second animated video on parents' interest in receiving an antibiotic for their child.

Study Design: This pre-post test study enrolled English and Spanish speaking parents (n = 1051) of children ages 1-5 years presenting with acute respiratory tract infection symptoms. Before meeting with their provider, parents rated their interest in receiving an antibiotic for their child, answered 6 true/false antibiotic knowledge questions, viewed the video, and then rated their antibiotic interest again.

A Multilevel Diabetes and CVD Risk Reduction Intervention in African American Churches: Project Faith Influencing Transformation (FIT) Feasibility and Outcomes.

Wide-reaching health promotion interventions are needed in influential, accessible community settings to address African American (AA) diabetes and CVD disparities. Most AAs are overweight/obese, which is a primary clinical risk factor for diabetes/CVD. Using a faith-community-engaged approach, this study examined feasibility and outcomes of Project Faith Influencing Transformation (FIT), a diabetes/CVD screening, prevention, and linkage to care pilot intervention to increase weight loss in AA church-populations at 8 months.

Motivational Interviewing to Encourage Quit Attempts Among Smokers Not Ready to Quit: A Trial-Based Economic Analysis.

Introduction: This study used data from a randomized controlled trial evaluating the efficacy of motivational interviewing (MI) relative to health education (HE) and brief advice (BA) to encourage quit attempts and cessation in order to determine their relative cost-effectiveness.

Aims And Methods: Urban community residents (n = 255) with low desire to quit smoking were randomized to MI, HE, or BA which differed in communication style and/or number of treatment sessions. Incremental cost-effectiveness ratios were used to compare the intensive interventions (MI and HE) to BA for facilitating quit attempts and smoking cessation.

Reasons for nonadherence and response to treatment in an adherence intervention trial for relapsing-remitting multiple sclerosis patients.

Objectives: To explore whether patients in an adherence trial who appeared not to take disease modifying therapy (DMT) for avoidance reasons could be reliably identified, by observational coding, for their main reason of not taking DMT. To determine whether reason groups could be distinguished by clinical and self-report psychological characteristics and intervention outcomes.

Method: Participants were multiple sclerosis patients (N = 78, 88.

Measuring shared decision-making in the pediatric outpatient setting: Psychometric performance of the SDM-Q-9 and CollaboRATE among English and Spanish speaking parents in the US Midwest.

Objective: Shared decision-making (SDM) measures have never been assessed for validity and feasibility in pediatric outpatient settings. We compared psychometric performance of parent adaptations of a well-established measure (SDM-Q-9) to a newer measure focusing on provider effort in facilitating SDM (CollaboRATE) in two clinics.

Methods: English (n = 955) and Spanish (n = 58) speaking parents of children ages 1-5 years with symptoms of acute respiratory tract infections (ARTI) completed post-visit SDM-Q-9, CollaboRATE, satisfaction items (visit, provider communication, and study participation), and qualitative feedback.

Feasibility and Outcomes of an HIV Testing Intervention in African American Churches.

The updated National HIV/AIDS Strategy recommends widespread HIV education and testing and calls the faith community to assist in these efforts. Yet, limited information exist on church-based HIV testing interventions. This study examined feasibility and assessed HIV testing outcomes of Taking It to the Pews (TIPS), a multilevel HIV education and testing intervention.

Protocol for a randomised trial of higher versus lower intensity patient-provider communication interventions to reduce antibiotic misuse in two paediatric ambulatory clinics in the USA.

Introduction: Children with acute respiratory tract infections (ARTIs) are prescribed up to 11.4 million unnecessary antibiotic prescriptions annually. Inadequate parent-provider communication is a chief contributor, yet efforts to reduce overprescribing have only indirectly targeted communication or been impractical.

Baseline predictors of DMT reinitiation among patients with multiple sclerosis following an MI-CBT intervention.

Patients with multiple sclerosis (MS) are often nonadherent to their disease modifying therapy (DMT). While recent studies demonstrate enhanced DMT adherence following intervention grounded in motivational interviewing (MI), little is known about how to address DMT reinitiation among MS patients who have prematurely discontinued DMT against medical advice and do not intend to reinitiate. We examined baseline predictors of DMT reinitiation among patients with MS who discontinued medications against medical advice following a telephone-based MI and Cognitive Behavioral Therapy (MI-CBT) intervention.

Exploring HIV Risk and Ex-Offender Status Among African American Church Populations: Considerations for Faith-Based Settings.

Studies with the general population indicate that involvement in the correctional system is strongly associated with the risk of contracting HIV and other sexually transmitted infections. However, limited studies have examined ex-offender status and HIV risk among African Americans-a population disproportionately impacted by incarceration and HIV-and even fewer have examined these risks among African American church-affiliated populations. This study examined ex-offender status, HIV risks, and perceptions of church involvement in HIV prevention strategies among 484 participants affiliated with African American churches.

Relationship of Autonomy Social Support to Quitting Motivation in Diverse Smokers.

Background: Research examining relationships between social support and smoking cessation has paid little attention to non-treatment seeking smokers and not considered the role of autonomy support for fostering quitting motivation. This study examined if autonomy support received from family and friends was associated with quitting motivation and making a quit attempt among diverse smokers with varying levels of quitting motivation. Demographic characteristics associated with autonomy support were explored.

If We Would Only Ask: How Henrietta Lacks Continues to Teach Us About Perceptions of Research and Genetic Research Among African Americans Today.

Background: African Americans are under-represented in research, and there are perceptions of unwillingness among African Americans to participate in research. We explored barriers to African American research participation.

Methods: We conducted a cross-sectional survey to explore knowledge and beliefs regarding medical and genetic research among adults (n = 169) at urban community events.

Harnessing Teams and Technology to Improve Outcomes in Infants With Single Ventricle.

Infants with single ventricle require staged cardiac surgery, with stage I typically performed shortly after birth, stage II at 4 to 6 months of age, and stage III at 3 to 5 years of age. There is a high risk of interstage mortality and morbidity after infants are discharged from the hospital between stages I and II. Traditional home monitoring requires caregivers to record measurements of weight and oxygen saturation into a binder and requires families to assume a surveillance role.

Recruiting unmotivated smokers into a smoking induction trial.

Little is known about effective methods to recruit unmotivated smokers into cessation induction trials, the reasons unmotivated smokers agree to participate, and the impact of those reasons on study outcomes. A mixed-method approach was used to examine recruitment data from a randomized controlled cessation induction trial that enrolled 255 adult smokers with low motivation to quit. Over 15 months, 33% of smokers who inquired about the study were enrolled.