Overview
My research has broadly focused on pain and symptom management in children, adolescents, and young adults with sickle cell disease. Previous NIH-funded projects were the first to describe the patterns of daily pain managed at home in school-aged children and adolescents, and risks factors for increased pain frequency in these age-groups. Subsequent longitudinal studies examined the onset and frequency of pain in infants and young children as reported by their parents. To gain further insights into the consequences of pain in this population, I conducted a multi-site cross-sectional study of health-related quality of life initially in adults, and then later in pediatric age-groups. This lead to my participation in the NIH-funded PROMIS® (Patient-Reported Outcomes Measurement Information System) network which supported my validation of the initial pediatric measures in children and adolescents with sickle cell disease, and the development and validation of pediatric pain intensity, pain quality, and pain behavior measures.
More recently, my involvement with the Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks (ACTTION), an FDA public-private partnership, and with the American Pain Society (APS) and the American Academy of Pain Medicine (AAPM), lead to my participation in working groups that developed evidence-based and multidimensional approaches to classifying acute and chronic pain conditions. I served as the co-chair for the sickle cell pain-working group that was tasked with identifying the diagnostic criteria specific for chronic sickle cell pain, and as a member of a similar working group that developed a related taxonomy for acute sickle cell pain. Evidence gaps that we identified during this process, particularly the frequent occurrence of acute pain in adolescents and adults with sickle cell disease and long-standing chronic pain, have become the focus of my current clinical research interests.
Building on my clinical experience in sickle cell disease management, certification in clinical trial management, and expertise in patient-reported outcomes (PROs), with funding from industry, foundation, and the NIH, I have become a leading pediatric sickle cell clinical trial investigator, having been a local site principal or co-investigator for over 25 multisite sickle cell disease clinical trials and observational studies, and the lead investigator on 2 multisite clinical trials.
Research Outcomes
- Health-related quality of life in children, adolescents, and adults with sickle cell disease
- Development and testing of psychometrically sound measures providing self-report of symptoms, particularly pain and fatigue, from children, adolescents, and young adults with sickle cell disease
- Characteristics of acute pain in children and adolescents with chronic sickle cell pain
- Risk factors for the development of chronic pain in adolescents with sickle cell disease