Using the consolidated framework for implementation research to identify challenges and opportunities for implementing a reproductive health education program into sickle cell disease care.

BACKGROUND: As survival rates for individuals with sickle cell disease (SCD) increase, calls have been made to improve their reproductive healthcare and outcomes. The research team created a web-based program entitled Fertility edUcaTion to Understand ReproductivE health in Sickle cell disease (FUTURES). The study aim was to use the Consolidated Framework for Implementation Research (CFIR) during pre-implementation to identify challenges and opportunities from the individual to systems level of implementation to ultimately optimize the integration of FUTURES into clinical practice. METHODS: Semi-structured interviews were conducted with clinicians, research team members, and adolescent and young adult (AYA) males with SCD and their caregivers who participated in pilot testing. Interviews (N = 31) were coded inductively and then mapped onto CFIR domains (i.e., outer setting, inner setting, characteristics of individuals, and intervention characteristics). RESULTS: Research team interviews indicated the lack of universal guidelines for reproductive care in this population and gaps in reproductive health knowledge as key reasons for developing FUTURES, also highlighting the importance of collaboration with community members during development. Clinicians reported intraorganizational communication as essential to implementing FUTURES and discussed challenges in addressing reproductive health due to competing priorities. Clinicians, AYAs, and caregivers reported positive views of FUTURES regarding length, engagement, accessibility, and content. Suggestions for the best setting and timing for implementation varied. CONCLUSIONS: Using CFIR during the pre-implementation phase highlighted challenges and opportunities regarding integrating this program into SCD care. These findings will inform adaptation and further testing of FUTURES to ensure effective implementation of this novel education program.

Experiences and outcomes of fertility testing in male adolescents with sickle cell disease.

Adult males with sickle cell disease (SCD) may have abnormal semen parameters, raising the concern that SCD and/or treatments may impact fertility. Yet, studies that include adolescents are lacking. To determine if fertility testing is feasible in male adolescents with SCD, and to explore their experiences and outcomes of fertility testing, 33 adolescents who completed a web-based SCD reproductive health education program were offered a free semen analysis. Five (15%) obtained testing and each had abnormalities. Barriers to testing included lack of time and transportation and discomfort. Findings highlight the need for larger, longitudinal studies using innovative testing approaches.

An Updated Characterization of Childhood Selective Mutism: Exploring Clinical Features, Treatment Utilization, and School Services.

Selective mutism (SM) is a severe but understudied childhood anxiety disorder. Most epidemiological research on SM was conducted decades ago and is limited by small sample sizes. This study analyzes parent-reported clinical data from 230 children with diagnosed and suspected SM to provide current information about the presentation of this disorder. Overall, anxiety and social anxiety symptoms were elevated. Gender ratio, comorbidities and family history of psychopathology were generally aligned with previous research. However, age of onset and diagnosis were both earlier than previously reported, with an average delay of 2 years between onset and diagnosis. The majority of children received therapy and school accommodations for their SM, yet there was large variability in types of interventions. This is the largest survey of children with SM conducted primarily within the US and it constitutes the first systematic inquiry into interventions and accommodations received within clinical and school settings.

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease.

Individuals with sickle cell disease are increasingly surviving into adulthood, many of whom have interest in future biological parenthood. Reproductive health knowledge is low among adolescent and young adult males and their caregivers. Their understanding of these topics is needed to optimize their reproductive health outcomes. As such, through collaboration with a community advisory board (adolescents and young adults with sickle cell disease and mothers of adolescent and young adult males with sickle cell disease) and digital design team, we developed a web-based sickle cell disease-focused reproductive health program entitled FUTURES to address these knowledge gaps. For phase I of this two phase feasibility and acceptability study, adolescent and young adult males and their caregivers will complete a pre- and post-program reproductive health knowledge and attitudes questionnaire to assess change in knowledge. In phase II, after learning about fertility testing as part of the FUTURES curriculum, adolescent and young adult male participants are given the option to pursue testing. The two-phase study aims to: 1) develop and test the feasibility, acceptability, and efficacy of a reproductive health web-based educational program at increasing reproductive health knowledge in male adolescent and young adult males with sickle cell disease and their caregivers, and 2) assess feasibility of fertility testing. The long-term goal is to improve reproductive and psychosocial outcomes among adolescent and young adult males with sickle cell disease.