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Healthcare Delivery Science

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 exactly how existing or new treatments can be selected and delivered efficiently to improve access, children’s outcomes and family satisfaction.

What We're Doing

Researchers with the Center for Healthcare Delivery Science have been awarded research grants for a range of studies:

 
Cross-Cultural Psychosocial Risk Screening in Pediatric Cancer
American Cancer Society, RSG-13-015

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.

Principal Investigator:

View Dr. Kazak's Curriculum Vitae »

 
Psychological Intervention Research in Pediatric Oncology
National Cancer Institute, K05CA128805

This is a senior scientist mentor award that provides for mentorship of multidisciplinary cancer researchers working on projects related to psychological intervention research.

Principal Investigator:

View Dr. Kazak's Curriculum Vitae »

 
Shared Medical Decision Making in Pediatrics
Shared Medical Decision Making in Pediatric Diabetes (Patient-Centered Outcomes Research Institute)

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.

Principal Investigator:

Tim Wysocki, PhD

 
Maintenance of Health Care Providers’ Clinical Proficiency: Transdisciplinary Analysis, Modeling and Intervention
Department of Defense – Telemedicine and Advanced Technology Research Center

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.

Principal Investigator:

Tim Wysocki, PhD

 
Promotion of Primary Care Provider (PCP) Screening for Adolescent Depression, Suicidality and Suicide Risk Factors Through Specialized PCP Training
Subcontract to Substance Abuse and Mental Health Services Administration grant awarded to University of Florida; PI: J. Goldhagen. August 2012 through July 2013

Data collection has just been completed for this study that evaluates the effects of a training program for community primary care pediatricians on their practices in screening adolescents for depression and suicide risks.

Principal Investigator:

Elise Fallucco, MD

 
PedsNet Clinical Data Research Network
Patient-Centered Outcomes Research Institute: January 2014 through June 2015

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 will combine de-identified electronic medical record data from all eight organizations to create an exceptionally valuable resource for comparative effectiveness research on children’s health conditions.

Learn More About This Initiative »
See Abstract »

During the 18-month Phase I of this grant support, which is in progress, each network is expected to meet a variety of technical and administrative milestones. The networks that achieve satisfactory progress will be eligible for more substantial Phase II funding that will enable completion of several research studies to demonstrate the network’s capabilities and to illustrate how other researchers can make use of this unique resource.

Nemours Principal Investigators:

Timothy Bunnell, PhD
Timothy Wysocki, PhD

PedsNet Principal Investigator: Christopher B. Forrest, MD, PhD, Children’s Hospital of Philadelphia

 
A Crowdsourced Social Media Portal for Parents of Very Young Children With Type 1 Diabetes.
A Crowdsourced Social Media Portal for Parents of Very Young Children With Type 1 Diabetes.

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 3-year, NIH-funded study, Multiple-Principal Investigators Tim Wysocki, PhD., A.B.P.P. and 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.

Learn More About the Specific Aims (PDF) »

Principal Investigators:

Tim Wysocki, PhD
Jessica Pierce, PhD

 
Trajectories of Sibling Adjustment to Childhood Cancer: The First Two Years Postdiagnosis.
Trajectories of Sibling Adjustment to Childhood Cancer: The First Two Years Postdiagnosis.

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 2-year study funded by the Andrew McDonough B+ Foundation, PI Melissa A. Alderfer, PhD., will partner with SuperSibs powered by Alex's Lemonade Stand Foundation to recruit 200 families of children with cancer from across the nation into a longitudinal study of sibling adjustment collecting data at three time points approximately six months apart. Findings from this study will lead to a better understand of the adjustment of siblings of children with cancer and distinguish early in the adjustment process those siblings who will prove to be resilient without intervention from those who require more support and assistance. This information will offer a rare contribution for this under-served and often unacknowledged population and is vital to ensure that siblings of children with cancer are getting the right level of care to meet their unique needs, embracing and promoting Nemours commitment to family centered care.

Principal Investigator:

Melissa A. Alderfer, PhD

 
Screening for Psychosocial Risk Among Families of Children with Spinal Muscular Atrophy
Screening for Psychosocial Risk Among Families of Children with Spinal Muscular Atrophy

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. Dr. Melissa Alderfer and her co-Investigators Dr. Matthew Butchbach, head of the Motor Neuron Diseases Research Group and Dr. Mena Scavina, 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.

Principal Investigator:
Melissa A. Alderfer, PhD

 
Screen to Intervene: A Family-Centered Approach to Identifying and Communicating Family Psychosocial Risk and Developing Evidence-Based Clinical Pathways in Hematopoietic Stem Cell Transplantation

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 3-year project is Funded by Alex’s Lemonade Stand and will be conducted at three sites: A.I. DuPont Hospital for Children, the University of Alabama-Birmingham, Division of Pediatric Hematology- Oncology at Children’s of Alabama Hospital and Cincinnati Children’s Hospital Medical Center. 

Principal Investigator:
Anne Kazak, PhD

Center for Healthcare Delivery Science

The Nemours Center for Healthcare Delivery Science (CHDS) is a research center across the Nemours Children’s Health System co-directed by Anne E. Kazak, Ph.D., ABPP in Wilmington, DE and Tim Wysocki, Ph.D., ABPP in Jacksonville, FL. 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 healthcare. 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; www.healthcaretoolbox.org), 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.

Our Mission

The Center for Healthcare Delivery Science (CHDS) helps Nemours to be among the top 5 percent of all U.S. pediatric health care organizations by:

  • using Nemours’ advanced electronic health record system to show the quality and value of health care we deliver
  • teaching Nemours medical staff how findings from health care delivery science research can be applied in their practices
  • helping Nemours care teams identify research questions and design research that can improve the quality, cost and value of care
  • attracting skilled researchers to conduct health care delivery science at Nemours
  • obtaining more funding for CHDS research, including studies based at Nemours and multisite national investigations

Center for Pediatric Traumatic Stress (CPTS)

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 co-located at duPont Hospital for Children and the 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, by integrating practical evidence-based tools into pediatric medical care, and by 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:

  • Engage and provide national expertise to health care providers and health care systems in improving outcomes for children and families with medical trauma
  • Adapt, disseminate, and provide training to mental health providers in trauma-informed assessments and interventions for children and families experiencing medical trauma
  • Ensure that children and families have access to evidence-based resources and interventions that address the impact of medical trauma
  • Equip other child-serving systems with trauma-informed approaches to address injury, illness, and medical problems in children and families. 

Activities to achieve these goals include:

  • Promoting professional and public awareness of medical trauma via CPTS's active Web presence www.healthcaretoolbox.org and via CPTS’s partnership with national health provider organizations
  • supporting implementation of effective assessment and intervention for medical trauma in health care settings
  • delivering training on and tools for assessment and intervention with medical trauma to health and mental health providers
  • disseminating trauma-focused resources in English and Spanish to children and families experiencing medical trauma

The Center for Pediatric Traumatic Stress is co-directed by Nancy Kassam-Adams, PhD, at the Children’s Hospital of Philadelphia and Anne Kazak, PhD, ABPP, at Nemours.

The center’s Nemours-based staff in Wilmington includes:
  • Stephen DiDonato, MS, Program Manager
  • Jennifer Christofferson, MS, Program Coordinator
  • Julia Price, Core Collaborator

Co-Directors

 
Anne E. Kazak, PhD, ABPP

Anne E. Kazak, Ph.D., ABPP is co-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, Del. 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, the Editor-in-Chief of Health Psychology and the Editor-in-Chief (Elect) of the American Psychologist. Dr. Kazak is a licensed psychologist (Delaware and Pennsylvania) and Professor of Pediatrics at the Sidney Kimmel Medical School of Thomas Jefferson University and Adjunct Professor of Psychology at the University of Delaware.  Dr. Kazak’s experience as a clinician, researcher and administrator have 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 (2009) 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.

Learn More About Dr. Kazak »
View Dr. Kazak's Curriculum Vitae (CV) »

 
Tim Wysocki, PhD, ABPP

Board-certified by the American Board of Professional Psychology, Dr. Wysocki has been with Nemours since 1992 as a pediatric psychologist and researcher. His roles include chief of the Division of Psychology and Psychiatry (1997-2004), director of the Center for Pediatric Psychology Research (1992-2013) and chair of two Nemours Institutional Review Boards from 2000 to present. He is president-elect of the Society of Pediatric Psychology.

Dr. Wysocki also has received numerous external research grants for his studies, most of which focus on family coping with Type 1 diabetes in children and adolescents. He has received national awards for this research and served on many editorial boards and research grant review panels on both the national and federal foundation levels. Dr. Wysocki did his undergraduate training at the University of Texas, his PhD at Western Michigan University and his postdoctoral fellowship at Johns Hopkins School of Medicine.

View Dr. Wysocki's Curriculum Vitae (CV) »


Center Staff

Wilmington - Nemours/Alfred I. duPont Hospital for Children:
  • Melissa A. Alderfer, PhD, Senior Research Scientist
  • Francisco Argueta Ortiz, MS, Clinical Research Coordinator
  • Dana Berger, MPH, CHDS Program Manager
  • Kimberly Canter, PhD, Postdoctoral Fellow
  • Jennifer Christofferson, MS, Clinical Research Coordinator
  • Stephen DiDonato, CPTS Program Manager
  • Alison Pinto-Taggi, M.Ed, Clinical Research Coordinator
  • Maureen McCafferty, Administrative Assistant
  • Mary McElwain, Administrative Assistant
  • Julia Price, PhD, Research Associate
  • Steven Reader, PhD, Research Associate
  • Nicole Ruppe, Clinical Research Coordinator
  • Michelle Scialla, MSN, Clinical Research Nurse
  • Gabriela Vega, Clinical Research Coordinator
Philadelphia/Nemours duPont Pediatrics, Thomas Jefferson University Hospital:
  • Jessica Rafalco, Clinical Research Assistant
Florida:
  • Melodie Gerry, Administrative Assistant
  • Chelsea Kozikowski, Research Specialist
  • Amy Milkes, MA, Research Specialist
  • Elizabeth Schifano, Clinical Research Coordinator
  • Rebecca Shackelford, Clinical Research Nurse
  • Amy Milkes, MA, Research Specialist
  • Alex Taylor, MACP, Senior Research Coordinator
  • Holly Turner, Clinical Research Nurse
  • Andre Williams, PhD, Biostatistician

Members of the Center’s Scientific Advisory Board

Richard Finkel, MD

Chief, Division of Neurology
Nemours Children’s Hospital, Orlando

James Franciosi, MD

Associate Chief, Division of Gastroenterology
Nemours Children’s Hospital, Orlando

Vicky Funanage, PhD (Advisory)

Director of Research
Nemours Foundation

Paul Garfinkel, MHS (Advisory)

Director, Nemours Office of Human Subjects Protection
Administrative Director, Clinical Research Operations

Samuel Gidding, MD (Advisory)

Chief, Division of Cardiology
Nemours/Alfred I. duPont Hospital for Children, Wilmington

Stephen Lawless, MD, MBA (Advisory)

Vice President for Quality and Safety
Nemours Foundation

David Milov, MD

Chief Medical Information Officer
Nemours Foundation

Paul Pitel, MD (Advisory)

Chair, Department of Pediatrics
Nemours Children's Specialty Care, Jacksonville

Iman Sharif, MD

Chief of General Pediatrics
Nemours/Alfred I. duPont Hospital for Children, Wilmington

Lloyd Werk, MD

Chief, Division of General Pediatrics
Nemours Children’s Hospital, Orlando

What We Can Offer

If you are a researcher, the Center for Healthcare Delivery Science (CHDS) can offer you a wide range of assistance:

  • mentoring and career development toward a goal of earning external funding for your CHDS work
  • consultation in preparing and refining your CHDS grant applications so they meet the Methodology Standards of the Patient Centered Outcomes Research Institute 
  • locating sources of funding for your CHDS research
  • helping you plan for the collection of preliminary data that could strengthen your CHDS grant applications
  • developing statistical analysis plans for your CHDS studies
  • assisting with queries to the Nemours Data Warehouse, either for research or for determining feasibility of research ideas
  • helping you find databases and patient registries that may provide opportunities for CHDS research in your field of interest 
  • connecting you with experts at Nemours and elsewhere with research interests similar to yours
  • connecting CHDS researchers elsewhere with the right people at Nemours
  • consultation in writing journal articles that report the results of your research

Collaborate With Us

With active labs in the Delaware Valley and Florida, we’re always seeking new research partners to collaborate with. Join us.
Learn More »

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