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.
Dr. Guite is an Associate Professor of Pediatrics at the University of Connecticut School of Medicine. She received her PhD in clinical psychology from Vanderbilt University and completed her psychology internship and postdoctoral fellowship training through the Brown University Clinical Psychology Training Consortium.
Dr. Guite’s clinical research expertise is focused on psychosocial factors associated with chronic pediatric pain and disabling somatic symptoms, parent and family coping, treatment development, and mechanisms of change within the context of transdisciplinary treatment. Her research program is located at the Center for Behavioral Health and she maintains affiliations with Divisions of Pain Medicine, Rheumatology, Child and Adolescent Psychiatry, and the Center for Motion Analysis at Connecticut Children’s Medical Center, the UConn Center for Advancement in Managing Pain (CAMP), UConn’s Institute for Collaboration on Health, Intervention, and Policy (InCHIP), and the Department of Psychology at Hartford Hospital/The Institute of Living.
Dr. Guite has authored numerous peer-reviewed journal articles, chapters, and abstracts, with research support provided through multiple sources. Her most recent funded research projects focus on the development of interventions for youth with chronic pain / symptoms and their parents and examines processes to support effective self-management of these challenging problems.
She presently serves as the site principal investigator for a National Institutes of Health (NIH) funded project, “Multi-site randomized clinical trial of FIT Teens for juvenile fibromyalgia (NIAMS U01 AR070474; PI: Kashikar-Zuck).” Connecticut Children’s Medical Center serves as one of only seven sites participating in this innovative 5 year project (6/15/2017-6/14/2022; Cincinnati Children’s Hospital Medical Center-primary site). The project will test which of three, 8-week group treatments is most helpful for managing symptoms and improving function in teenagers with juvenile fibromyalgia (JFM), including (1) Fibromyalgia Integrative Training (FIT), which combines coping skills training with specialized neuromuscular exercises designed to improve walking form, balance and strength, (2) coping skills training (also called Cognitive Behavioral Therapy, or CBT) or (3) graded low-impact aerobic exercises (GAE) to improve fitness, with progress tracked over a 12 month follow-up period.
Dr. Guite serves as a co-Principal investigator with Beth S. Russell, PhD, for, “Parents as Coping Coaches (PaCC),” an UConn InCHIP/CCMC Dual-PI Seed Grant (05/15/15-05/14/17) that supported development of a brief parent-focused group intervention to improve parenting distress tolerance (primary aim) and functional outcomes for adolescents with chronic pain syndromes (secondary aim). The success of this project has led to subsequent NIH grant submissions and provides a foundation from which to further expand the intervention to include both parents and adolescents to strengthen intervention outcomes for both.
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.
Visit Dr. Wakefield’s profile to learn more.