The Division of Pain & Palliative Medicine at Connecticut Children’s Medical Center is at the forefront of pediatric pain research. Our top physicians and researchers are dedicated to easing children’s pain with clinical advances, supported by commercial and private funding along with grants from the National Institutes of Health (NIH).
A nationally and internationally renowned lecturer on pediatric pain management, William Zempsky, MD, is
an expert in the area of transdermal drug delivery for local anesthesia. Supported by James P. Santanelli, MPH, Dr. Zempsky’s award-winning NIH-funded research on pain in children with sickle cell disease includes the following studies:
Inpatient Pediatric Physical Activity Questionnaire (IPPAQ) Study
The current standard for pain assessment, being the numeric rating of pain intensity, does not accurately assess the chronic pain condition that is sickle cell disease. The Inpatient Pediatric Physical Activity Questionnaire (IPPAQ) is a measure of daily function in children with sickle cell disease hospitalized with vasoocclusive pain. This newly developed clinical tool will reflect the overall physical, emotional, and functional progress of a patient with sickle cell disease.
Sickle Cell Pain Burden Interview (SCPBI) Study
Sickle cell disease is a chronic pain condition that can require infrequent to regular clinic visits. Tracking the pain burden of these patients over time can be challenging. Dr. Zempsky and his research team developed and validated a functionally based measure of pain impact—the Sickle Cell Pain Burden Interview (SCPBI). This tool better defines the pain experience for children with sickle cell disease as well as their pain burden over the course of the year.
Functional Magnetic Resonance Imaging (fMRI) Study
Very little is known about how pain is perceived by patients with sickle cell disease. One potentially useful way to measure this is with functional Magnetic Resonance Imaging (fMRI). FMRI is a commonly used method to measure brain activity. In this study we are looking to see how low levels of controlled pain are processed in patients with sickle cell disease and in healthy controls while using fMRI. Dr. Zempsky hopes that this study will help us understand the impact of recurrent pain in sickle cell disease as well as guide healthcare providers to more effective pain treatments for their pediatric patients.
Teens Taking Charge Study
The transition from pediatric to adult self-managed healthcare is a challenging time for young adults with sickle cell disease. Dr. Zempsky believes that an educational website may provide a widespread medium for delivering sound medical advice and mentorship during this transition period.
In the first phase of the Teens Taking Charge study, Dr. Zempsky and his research staff are running focus groups with pediatric sickle cell patients, parents of sickle cell patients, and healthcare providers of sickle cell patients to obtain a cumulative knowledge of what critical information should be on such a website. In the second phase of this project, the website will be constructed and activated for young adults with sickle cell disease to use.
Email wzempsk [at] connecticutchildrens.org (William Zempsky, MD) or jsantan [at] connecticutchildrens.org (James P. Santanelli, MPH) to learn more.
Emily Wakefield, Psy.D. is dedicated to understand the role and impact of psychosocial factors for children
and adolescents with chronic pain on health outcomes, and develop clinical interventions that will improve quality of life in this population.
Pain-Related Stigma in Adolescents with Chronic Musculoskeletal Pain
Adolescents with chronic pain commonly experience diagnostic uncertainty and disease invisibility that leads to others not believing their pain, known as pain-related stigma. The primary goal of the pain-related stigma project is to (1) develop a novel pain-related stigma framework that is useful in assessing outcomes in adolescents with chronic musculoskeletal pain (CMP), and (2) develop and validate the Pain-Related Stigma Scale for Adolescents (PReSS-A) in adolescents with CMP. This study will lay the foundation for understanding pain-related stigma and developing clinical interventions that will target social factors and improve health outcomes in this population.
This project is NIH-funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Visit Dr. Wakefield’s profile to learn more.