Social network dynamics under experimental manipulations of predation risk and food abundance in wild rock hyraxes.

Sickle cell disease (SCD) is a group of genetic disorders resulting in rigid, abnormally adhesive, and dehydrated red blood cells. Individuals with SCD can experience severe complications, including anemia, pain, stroke, and organ injury, which contribute to poor quality of life and early mortality. Risk for disease complications and premature death rises sharply in adolescence and young adulthood, when chronic organ damage is compounded by inconsistent follow-up and reduced preventive care. Safe and effective therapies are available for individuals with SCD, but pervasive research-to-practice gaps limit their reach. Hydroxyurea (HU) is the gold standard treatment for SCD. It reduces complications, health care utilization, and costs, and it improves quality of life, growth, and survival. Despite decades of strong evidence for HU, uptake has been slow. Recent data indicate that only about 25% of individuals with SCD are prescribed HU. Suboptimal HU use is especially notable among adolescents and young adults (AYAs), who have the fewest days supplied, longest breaks, and poorest adherence of all age groups. Barriers to HU utilization are multi-factorial. AYAs report lack of involvement in decision-making, inadequate knowledge, and doubts about efficacy and safety. Providers may not offer HU due to biased assumptions about patient adherence. These challenges are compounded by structural and social determinants of health obstacles to care that are prevalent in this population (e.g., limited transportation, low health literacy). Similar challenges limit the use of newer therapies that have been approved by the FDA in recent years (i.e., L-glutamine, crizanlizumab), with current uptake estimated at <5% of the population. To make informed health care decisions, AYAs require effective education about their health condition and available treatment options. Unfortunately, existing SCD education strategies are not user-centered, grounded in health promotion theory, or designed for dissemination. For example, pharmacy handouts on HU rarely identify SCD as an indication for use, often contain inaccuracies related to long-term cancer risk, and have an average reading level two grades higher than recommended for patient education.