Nemours Biomedical Research
Nemours’ Center for Healthcare Delivery Science (CHDS) studies the many influences that can affect the outcomes, quality, cost, safety and value of children’s health care. Our goal is to build a strong base of scientific evidence about how health care can best be delivered so that children get exactly the care they need, right when they need it — and families feel that they have had an active role in that care.
We can achieve real gains in children’s health by learning how existing or new treatments can be selected and delivered efficiently to improve access, children’s outcomes and family satisfaction.
Researchers with the Center for Healthcare Delivery Science have been awarded research grants for a range of studies:
This project will explore the impact of trauma-informed patient care and the role of play in helping children and families heal and cope while in the hospital. The multiphase research will gather perspectives of patients/families of diverse backgrounds and healthcare providers regarding the need for, and best ways to deliver, trauma-informed pediatric patient care — an approach that incorporates awareness of the potentially traumatic nature of medical events and aims to reduce or prevent traumatic stress reactions in children. Research findings will be used to develop an innovative, high-quality program focused on trauma-informed care, using play materials and related resources designed to support and comfort children experiencing stress reactions due to life-threatening illness, injury or painful medical procedures.
The goal of this project is to adapt The Psychosocial Assessment Tool © (PAT) for use in the Autism population and pilot it in the Nemours Swank Autism Center.
Anne Kazak, PhD, ABPP
Diane Treadwell-Deering, MD
Nemours is one of eight major pediatric care organizations comprising PedsNet that together were selected by the Patient-Centered Outcomes Research Institute (PCORI) as one of its 11 Clinical Data Research Networks. Nemours’ partners in PedsNet include Children’s Hospital of Philadelphia (the lead institution), Cincinnati Children’s Hospital and Medical Center, Boston Children’s Hospital, St. Louis Children’s Hospital, Nationwide Children’s Hospital, Children’s Hospital of Colorado and Seattle Children’s Hospital. PedsNet has combined de-identified electronic medical record data comprising 4.7 million clinical encounters and 2.3 million children from all eight organizations to create an exceptionally valuable resource for comparative effectiveness research on children’s health conditions.
During the 18-month Phase I of this grant support, which is complete, PEDSNet achieved a variety of technical and administrative milestones. In October 2015, PEDSNet was awarded Phase II funding that will enable completion of several research studies to demonstrate the network’s capabilities, to illustrate how other researchers can make use of this unique resource and to implement a sustainability plan over the next 3 years.
Christopher B. Forrest, MD, PhD, Children’s Hospital of Philadelphia
Taking care of children with type 1 diabetes who are under 6 years old is a huge challenge, and parental coping is a strong predictor of child health outcomes. In this three-year study, funded by the National Institutes of Health (NIH), principal investigators Jessica Pierce, PhD, will coordinate the design and evaluation of a "social media portal" that will provide medically accurate, "parent to parent" guidance and support in coping with the daily hurdles that parents must somehow handle. The project will use "crowdsourcing" to obtain input from a 200-member Parent Crowd and a 30-member Health Care Provider Crowd over time to gradually design and build this internet resource for parents. Once the social media portal has been built and is working, the team will complete a randomized controlled trial to evaluate effects of using this resource on child health and behavioral outcomes and on parents' coping, distress and quality of life. Parents' patterns of using the social media portal and their thoughts about how it could be improved will also be measured periodically during the trial.
Following guidelines for the development and validation of measures, this study will ensure that the PAT Sibling Module has internal consistency, concurrent validity and predictive validity.
Spinal muscular atrophy (SMA) poses significant challenges to families. Research documents that the burden of this disease is high and escalates throughout the child’s life as functional abilities decline and complications increase. The psychosocial needs of these families, however, are not systematically assessed, leading to gaps in the delivery of psychosocial care. Melissa Alderfer, PhD, and her co-investigators Matthew Butchbach, MD, head of the Motor Neuron Diseases Research Group, and Mena Scavina, MD, attending pediatric neurologist, received a one-year Clinical Care Pilot award from CureSMA to develop a brief, standardized measure of family psychosocial risks and resources, based upon the Psychosocial Assessment Tool (PAT) and tailored to the challenges and demands associated with SMA. This tool will eventually provide a way to screen families in an effective and inclusive manner, systematically identifying those in need so that appropriate psychosocial care can be provided.
Melissa A. Alderfer, PhD
The delivery of psychosocial care to youth undergoing hematopoietic stem cell transplantation (HSCT) and their families lags behind existing scientific knowledge about the challenges experienced by patients and their families. This project will validate an adaptation of a brief parent report screener of family psychosocial risk — the Psychosocial Assessment Tool (PAT) for the particularly high-risk group of patients undergoing intensive treatments associated with HSCT, and integrate families in the development of clinical pathways of care for this high-risk population. This three-year project is funded by Alex’s Lemonade Stand and will be conducted at three sites: Nemours/Alfred I. duPont Hospital for Children, Cincinnati Children’s Hospital Medical Center and the University of Alabama-Birmingham's Division of Pediatric Hematology/Oncology at Children’s of Alabama Hospital.
Anne E. Kazak, PhD, ABPP
NIH Centers of Biomedical Research Excellence (COBRE)
Families of children with Sickle Cell Disease (SCD) face significant illness and life-related psychosocial adversity that can affect health outcomes and contribute to health disparities. There is currently a lack of validated and culturally-specific psychosocial screening measures for families of children with SCD. The purpose of this mixed methods study is to adapt the Psychosocial Assessment Tool (PAT) as a screening tool for psychosocial risk in families of children with SCD. The specific aims of the study include: 1) to assess caregiver perspectives on the acceptability and utility of the PAT in SCD, to help inform possible modifications to the measure, 2) derive risk factors from the PAT-SCD and evaluate the relationship between risk factors and relevant functional health and school outcomes; and 3) to establish the validity of the PAT-SCD and its psychometric properties. This study is one of several projects that are part of a 5-year funded grant from the National Institutes of Health Centers of Biomedical Research Excellence (NIH COBRE) to develop a comprehensive Sickle Cell Disease clinical and research center in the state of Delaware.
Nationally, fewer than 25 percent of adolescents with type 1 diabetes achieve glycated hemoglobin levels below 7.5 percent, a widely accepted indicator of acceptable blood glucose control. This NIH-funded (1-DP3-DK113235) project will engage an online community of adolescents with type 1 diabetes, parents and diabetes professionals in developing and refining a Transdisciplinary Care model for adolescents with type 1 diabetes. The researchers will then compare Transdisciplinary Care to Usual Care in a 1-year, randomized controlled trial. In the Transdisciplinary Care model, adolescents' and parents' diabetes clinic visits will be conjoint encounters with a nurse practitioner, dietitian and psychologist who will train each other in the fundamentals and methods of their respective professions.
The goal of this project is to identify the content domain for a multidimensional measure of Diabetes Care Transition outcomes.
This study aims to characterize the ways in which children with cancer and their parents make decisions around pain management at home and explore how this joint decision-making impacts children’s pain.
Aimee Hildenbrand, PhD
Mentor: Melissa A. Alderfer, PhD
This pilot project aims to identify rates of Hydroxyurea use at Nemours and barriers to uptake from the perspective of patients, caregivers, and providers.
Aimee Hildenbrand, PhD
Mentor: Melissa Alderfer, PhD
This study intervention consists of brief, tailored, culturally sensitive videos on the use of evidence-based parenting techniques for managing a child’s obesity-related behaviors and evaluates the impact of the intervention on parental self-efficacy, child behaviors and child weight.
This project will adapt the empirically-based Surviving Cancer Competently Intervention Program (SCCIP ©) for delivery at Family Camp sessions of Camp Okizu, a camp serving the pediatric oncology community.
The major goal of this project is to collect feasibility and acceptability data regarding the use of eSCCIP at a community mental health clinic focused on supporting individuals with cancer and their families.
This study utilizes a mixed methods approach combining electronically captured portal use data, quantitative measures, and qualitative interviews with caregivers of children with cancer to examine outcomes of portal use.
The goal of this study is to validate the use of mobile phone-based ecological momentary assessment to assess how adolescents use their continuous glucose monitors.
Paul Enlow, PhD
Mentors: Melissa A. Alderfer, PhD
This project consists of a one-day workshop to facilitate the implementation of The Psychosocial Assessment Tool© (PAT) in centers that treat children with cancer in Florida. The PAT is a brief parent report web-based screener, available in English and Spanish, that assesses psychosocial risk across the child and family’s social environment. The PAT was developed by Dr. Anne Kazak, who will be conducting the workshop in conjunction with Helena Gutierrez Richards, LCSW and other social workers at Nemours Children’s Specialty Care in Jacksonville who have been using the PAT in clinical practice since April 2015.
Helena Gutierrez Richards, LCSW
Anne Kazak, PhD, ABPP (Co-Investigator)
The Psychosocial Assessment Tool (PAT) is a parent report screener of psychosocial risk for families in pediatric health care. This project studies English and Spanish versions of the PAT in pediatric cancer to describe changes over time in risk, particularly for Spanish-speaking families, in an effort to identify factors related to health disparities in this population. The study is being conducted at Nemours/Alfred I. duPont Hospital for Children, The Children’s Hospital of Philadelphia (CHOP) and MD Anderson Cancer Center.
This is a senior scientist mentor award that provides for mentorship of multidisciplinary cancer researchers working on projects related to psychological intervention research.
Previous research suggests that siblings of children with cancer experience various negative emotions including guilt, loss, fear, grief, anger and helplessness These symptoms are not unexpected — childhood cancer in the family is an extreme stressor — and, with time, most siblings find ways to cope with their negative reactions and return to their previous levels of functioning. For some, however, these symptoms persist and can develop into troublesome emotional and behavioral problems. In this two-year study funded by the Andrew McDonough B+ Foundation, principal investigator Melissa A. Alderfer, PhD, will partner with SuperSibs, a program of the Alex's Lemonade Stand Foundation, to recruit 200 families of children with cancer from across the nation into a longitudinal study of sibling adjustment. Data will be collected at three points, approximately six months apart. Findings from this study will lead to a better understanding of the adjustment of siblings of children with cancer, and will distinguish early in the adjustment process those siblings who will prove to be resilient without intervention from those who require more support and assistance. Offering a rare contribution for this underserved and often unacknowledged population, this information is vital to embracing and promoting Nemours' commitment to family-centered care — ensuring that siblings of children with cancer are getting the right level of care to meet their unique needs.
Studies show that teens with diabetes benefit less than adults from new technologies such as insulin pumps and continuous glucose monitors. In this study, we will be developing and testing Web-delivered resources that are designed to help parents and teens with diabetes make better decisions about whether to add these devices to their care.
This project will plan and test automated feedback supports as part of the electronic medical record system to help doctors make the best decisions about children’s care.
This project addressed whether the delivery of behavioral interventions improved glycemic control and acute complications and whether healthcare costs lowered when behavioral interventions were part of care.
The goal of this study is to assess the impact of psychosocial risk on child weight, cardiometabolic risk, and visit adherence and to determine psychosocial predictors of child weight, cardiometabolic risk, and visit adherence, leveraging the capabilities of an EHR-linked patient portal for data collection.
The study documented parent perspectives on the psychosocial needs of families of infants with congenital heart disease and the impact of a family based psychosocial intervention to prevent medical traumatic stress and enhance family functioning.
The Nemours Center for Healthcare Delivery Science (CHDS) is a research center across the Nemours Children’s Health System directed by Anne E. Kazak, PhD, ABPP, in Wilmington, Del. Founded in 2012, the center consists of an interdisciplinary team of research scientists, physicians and pediatric psychologists who apply scientific methods and principles to the analysis of variables and processes that affect the delivery, safety, outcomes, cost, quality and value of pediatric health care.
Key areas of research include clinical decision making, family adaptation to pediatric chronic medical conditions, health informatics, transition from pediatric to adult care, cancer care delivery research and family adjustment, including psychosocial risk screening in pediatric illness. Funding is provided by grants and contracts from the National Institutes of Health, Patient-Centered Outcomes Research Institute, American Cancer Society, the Department of Defense, Substance Abuse and Mental Health Services Administration, and private foundations.
A number of research studies are joint efforts with the Center for Pediatric Traumatic Stress (CPTS), a Center within the National Child Traumatic Stress Network that focuses on the development of empirically based screening and intervention for children and families who have experienced traumatic stress due to pediatric illness and injury. Center investigators provide mentoring and consultation to colleagues who may wish to conduct research in health care delivery science.
The Center for Healthcare Delivery Science helps Nemours to be among the top 5 percent of all U.S. pediatric health care organizations by:
A number of studies are joint efforts with the Center for Pediatric Traumatic Stress (CPTS), founded in 2002 to address medical trauma in the lives of children and families. The center is colocated at Nemours/Alfred I. duPont Hospital for Children and Children’s Hospital of Philadelphia.
The Center for Pediatric Traumatic Stress (CPTS) addresses health-related trauma in the lives of children and families. The center's mission is to reduce medical traumatic stress by promoting trauma-informed health care, integrating practical evidence-based tools into pediatric medical care, and ensuring that health care providers are knowledgeable and skilled in trauma-informed care for culturally diverse youth and their families. CPTS has developed and evaluated acute and brief family-focused interventions, which can be integrated within pediatric health care.
The center’s current goals are to:
Activities to achieve these goals include:
The Center for Pediatric Traumatic Stress is co-directed by Nancy Kassam-Adams, PhD, at Children’s Hospital of Philadelphia and Anne Kazak, PhD, ABPP, at Nemours/Alfred I. duPont Hospital for Children.
Anne E. Kazak, PhD, ABPP is the Director of the Center for Healthcare Delivery Science at Nemours Children's Health System, based at Nemours/Alfred I. du Pont Hospital for Children in Wilmington, Delaware. She is also the co-Director of the Center for Pediatric Traumatic Stress, a Treatment and Services Adaptation Center in the National Child Traumatic Stress Network and the Editor-in-Chief of the American Psychologist. She is a past Editor of Health Psychology, the Journal of Family Psychology, and the Journal of Pediatric Psychology. Dr. Kazak is a licensed psychologist (in Delaware and Pennsylvania) and Professor of Pediatrics at the Sidney Kimmel Medical School of Thomas Jefferson University, Adjunct Professor of Psychological and Brain Sciences at the University of Delaware, and Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. Dr. Kazak's experience as a clinician, researcher and administrator has helped to advance integrated (medical, behavioral) care for children and families from a systems perspective. She is a frequent consultant and reviewer on national and international projects related to pediatric psychology. Dr. Kazak is the recipient of many research grants and several awards, including the Cummings American Psychological Cummings PSYCHE Prize for integrated care. Dr. Kazak received her PhD in Clinical-Community Psychology from the University of Virginia and completed her internship training at Yale University School of Medicine, Department of Psychiatry. Her undergraduate degree was awarded by Smith College in Massachusetts.
Melissa Alderfer, PhD is Associate Director of the Center for Healthcare Delivery Science at Nemours Children's Health System, based at Nemours/Alfred I. du Pont Hospital for Children in Wilmington, Delaware. Dr. Alderfer is a Principal Research Scientist at Nemours, an Associate Professor of Pediatrics at Sidney Kimmel Medical College of Thomas Jefferson University, an Affiliated Associate Professor of Psychological and Brain Sciences at the University of Delaware, and an Associate Editor of Journal of Pediatric Psychology. She is a licensed clinical psychologist (in Pennsylvania). Dr. Alderfer’s program of research focuses on how childhood chronic illness impacts families, how families adapt and learn to manage illness and the healthcare system, and how we can intervene to improve the experience. Dr. Alderfer has received funding for her research from the National Cancer Institute, Department of Defense, American Cancer Society, Alex’s Lemonade Stand Foundation and the Andrew McDonough B+ Cancer Foundation. Dr. Alderfer received her PhD in Clinical Psychology from the University of Utah, completed her internship training at Children’s Memorial Medical Center in Chicago, IL, and completed a postdoctoral fellowship at The Children’s Hospital of Philadelphia. She received her undergraduate degree and a Masters of Science in Education at the University of Pennsylvania.
If you are a researcher, the Center for Healthcare Delivery Science (CHDS) can offer you a wide range of assistance: