Jerlym Porter, PhD

For patients with chronic conditions, such as sickle cell disease, maintaining lifelong healthcare to manage the condition’s impact has a profound effect on quality of life. My research focuses on health promotion and disease management for youth with SCD. This work began with two primary objectives: (1) characterizing and improving the transition from pediatric to adult care and (2) identifying behavioral and psychosocial factors that impact adjustment, functioning and health outcomes. Building on this foundation, my research has expanded to examine disease self-management, including pain management and the psychosocial factors that influence decision-making and outcomes for emerging transformative therapies.

To aid in a patient’s readiness to transition from pediatric to adult healthcare, much of my work has focused on increasing disease knowledge and self-management skills for adolescents and young adults (AYAs) with sickle cell disease. My work has played an integral role in the development and continuation of the St. Jude Transition to Adult Care program, which serves as a co-location model of care in which pediatric and adult providers overlap to provide continuity of care. 

As treatments advance for people living with sickle cell disease, research continues to examine the impact of psychosocial functioning on an individual’s quality of life.  Many patients experience pain, which is a complex biopsychosocial process that requires a multidimensional approach to its study and management. The biopsychosocial mechanisms underlying acute and chronic pain remain poorly understood. Therefore, my research aims to improve our understanding of how biological, psychological and social factors interact to shape pain experiences through multimodal pain assessment.  

With the growing availability of transformative therapies, understanding how psychosocial factors influence quality of life and treatment decision-making has become increasingly important. Through my participation in transformative treatment initiatives, best practices have been developed to support patients preparing for transformative treatment outcomes and to address psychosocial needs during and after treatment. My research focuses on identifying psychosocial barriers and facilitators to treatment and long-term wellbeing. This work will inform targeted, patient-centered interventions that optimize both quality of life and treatment outcomes. By expanding the lens with how we view and study sickle cell disease and other chronic illnesses that affect children, we work toward improving quality of life beyond physical treatment.