Comprehensive Cancer Care for Children and their Families

When: March 9, 2015 - March 10, 2015 (8:00 AM Eastern)
Where: National Academy of Sciences Building (NAS Lecture Room) • 2101 Constitution Avenue NW , Washington, DC 20418

Topics Biomedical and Health Research, Diseases, Health Care Workforce, Health Services, Coverage, and Access, Quality and Patient Safety
Activity: National Cancer Policy Forum
Board: Board on Health Care Services

In recent years, advances in treatment have led to increased survival for children with pediatric cancer. However many of these treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and late-stage effects. These cancer treatments yield a steep cost of survival, including gross mental impairment, poor motor functioning, and highly compromised social well-being for decades of life after treatment. Additionally, cancer in children triggers a fundamentally different set of needs in families. A cancer diagnosis places an enormous burden on families and caregivers, who must manage the stress, anticipatory grief, disruption in family activities and school, and financial burden associated with caring for a seriously ill child. Parents must make difficult decisions about therapeutic treatment options with known toxicities, balancing survival and quality of life priorities often with limited or no support to guide their choices while navigating a complex and often unfamiliar medical system. Children with cancer may endure pain from the cancer itself, anxiety and discomfort related to medical procedures and hospitalizations, physical side effects from treatments, separation anxiety, and psychological distress.
Because children with cancer are still growing and developing throughout their illness and treatment, the long-term impact of cancer treatments varies depending on the age at diagnosis and treatment. A major goal of childhood oncology research and practice is also to decrease the burden of treatment and improve the quality-of-life of pediatric cancer patients, survivors, and their families across the lifespan. In order to achieve these goals, optimal care for children with cancer must comprehensively integrate pediatric palliative care with standard oncology care.

Through invited presentations and panel discussions, this workshop hosted by the NCPF and the American Cancer Society (ACS) will examine recent trends in comprehensive cancer care for pediatric cancer patients and their families and consider potential policy actions to improve care and outcomes. Participants will review existing evidence and efforts for integrating pediatric palliative care and quality of life strategies in childhood oncology research and practice, and will discuss additional research needed to minimize toxicities of pediatric cancer treatments and the resultant symptoms and late effects. A major goal of the workshop will be to facilitate discussion about potential strategies and actions for effectively applying existing evidence and quality of life strategies into pediatric oncology research, development, and practice.

 Participants will be invited to discuss topics that may include:

•An overview of the symptoms and late effects experienced by the majority of children diagnosed with cancer
•The current evidence base and strategies to support early integration of palliative care and psychosocial support into pediatric oncology     
•The current evidence base and strategies to support quality of life and to prevent, minimize, or address toxicities and associated symptoms and late effects
•Potential action steps for effectively applying the available evidence on palliative care, psychosocial support, survivorship, and quality of life for pediatric cancer patients and their families
•Key gaps in the evidence base and workforce training needs as well as the challenges and opportunities to address those gaps to improve the care and outcomes for pediatric cancer patients and their families

Workshop Planning Committee
Joanne Wolfe, Chair, Harvard University
Beth Anne Baber, The Nicholas Conor Institute for Pediatric Cancer Research
Otis W. Brawley, American Cancer Society
Chris Feudtner, The Children’s Hospital of Philadelphia
Patricia A. Ganz, University of California-Los Angeles
Pamela Hinds, Children’s National Health System
Melissa Hudson, St. Jude’s Children’s Research Hospital
Gregory Reaman, Food and Drug Administration
Eric Sandler, Nemours Children’s Clinic
Lori Wiener, National Cancer Institute
Robin Yabroff, National Cancer Institute

Confirmed Speakers
Peter Adamson, Children's Oncology Group
Richard Aplenc, Children's Hospital of Philadelphia
Beth Anne Baber, The Nicholas Conor Institute
Smita Bhahtia, City of Hope
Kira Bona, Dana-Farber Cancer Institute
Jennifer Cullen, American Childhood Cancer Organization
Chris Feudtner, The Children’s Hospital of Philadelphia
Mary Brigid Bradley-Garelik, Bristol-Meyers Squibb
Pam Hinds, Children’s National Health System, George Washington University
Paul Jacobsen, H. Lee Moffit Cancer Center
Anne Kazak, Nemours Children’s Health Network
Mary Jo Kupst, Medical College of Wisconsin
Jennifer Mack, Dana-Farber Cancer Institute
Melinda Marchiano, Patient Advocate and Survivor
Lori Minasian, NCI
Robert Noll, University of Pittsburgh
Kevin Oeffinger, MSKCC
Christina Theodore-Oklota, Genentech
Phillip Pizzo, Stanford University
Gregory Reaman, Food and Drug Administration
Bryce Reeve, The University of North Carolina at Chapel Hill
Christina Bucci-Rechtweg, Novartis
Eric Sandler, Nemours Children’s Health Network  
Malcolm Smith, National Cancer Institute
Lillian Sung, The Hospital for Sick Children, Toronto
Lisa Schwartz, Children's Hospital of Philadelphia
Lori Wiener, National Cancer Institute
Joanne Wolfe, Dana-Farber Cancer Institute

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