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Page 101 Cite

Suggested Citation:"Appendix." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.

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Appendix

Statement of Task and Workshop Agenda

STATEMENT OF TASK

An ad hoc committee will plan and host a 1.5-day public workshop that will feature invited presentations and panel discussions. Workshop participants will examine evidence and efforts for integrating quality-of-life strategies into childhood cancer clinical research and practice as well as drug and diagnostic development.

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; and
Key gaps in the evidence base and the challenges and opportunities to address those gaps to improve the care and outcomes for pediatric cancer patients and their families.

Page 102 Cite

Suggested Citation:"Appendix." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.

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The committee will develop the agenda for the workshop sessions, select and invite speakers and discussants, and moderate the discussions. An individually authored workshop summary of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.

WORKSHOP AGENDA

March 9, 2015

7:45 am	Registration
8:00 am	Welcome from the National Cancer Policy Forum (NCPF) and the American Cancer Society (ACS) Patricia Ganz, UCLA, NCPF Vice Chair Otis Brawley, ACS
	Overview of the Workshop Joanne Wolfe, Dana-Farber Cancer Institute, Workshop Planning Committee Chair
8:20 am	Session 1: The Current Pediatric Oncology Landscape—An Imperative for Change *Moderator:* Phillip Pizzo, Stanford University
	Unique clinical and basic science perspectives, and challenges to and opportunities for further treatment advances in pediatric oncology Gregory Reaman, FDA
	Review of cancer research and care landscape, challenges of treatment toxicities, and addressing long-term survivorship needs and late effects experienced by the majority of children diagnosed with cancer Smita Bhatia, University of Alabama at Birmingham
	The patient and family experience: Critical opportunities to advance progress and improve quality of care Mary Jo Kupst, Medical College of Wisconsin

Page 103 Cite

Suggested Citation:"Appendix." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.

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	Group Discussion
	Opening statements from the parent perspective Jennifer Cullen, American Childhood Cancer Organization Eric Sandler, Nemours Children’s Hospital
10:15 am	Break
10:30 am	Session 2: Consideration of Patient/Family Engagement in Assessing the Pediatric Pipeline—Innovations in Treatment Research and Development *Moderator:* Malcolm Smith, NCI
	Academic perspective on clinical research Lillian Sung, The Hospital for Sick Children, Toronto
	Stakeholder engagement: Practical opportunities and approaches to improve the research and development landscape Beth Anne Baber, The Nicholas Conor Institute Lee Greenberger, Leukemia & Lymphoma Society
	Industry panel on patient- and parent-reported outcome measures: Mechanisms and management as decision points in drug development Christina Theodore-Oklota, Genentech Christina Bucci-Rechtweg, Novartis Mary Brigid Bradley-Garelik, Bristol-Myers Squibb
	Group Discussion
12:30 pm	Lunch Break

Page 104 Cite

Suggested Citation:"Appendix." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.

×

1:15 pm	Session 3: Integrating Pediatric Palliative Care—Ensuring Child and Family Well-Being Along the Continuum *Moderator:* Chris Feudtner, The Children’s Hospital of Philadelphia
	Current practices for providing pediatric palliative and psychosocial care Lori Wiener, NCI
	Strategies for improving communication and early integration in all care settings and systems Jennifer Mack, Dana-Farber Cancer Institute
	Addressing workforce development needs and current gaps in the evidence Joanne Wolfe, Dana-Farber Cancer Institute
	Group Discussion
	Opening statements from the parent perspective Gavin Lindberg, The EVAN Foundation Victoria Sardi-Brown and Peter Brown, Mattie Miracle Cancer Foundation
3:00 pm	Break
3:15 pm	Session 4: Improving Care Transitions for Children and Families Across the Continuum *Moderator:* Eric Sandler, Nemours Children’s Health System
	Family support through transitions and family/peer influence on adjustment to childhood cancer Robert Noll, University of Pittsburgh
	Early-phase transitions in care Lisa Schwartz, The Children’s Hospital of Philadelphia

Page 105 Cite

Suggested Citation:"Appendix." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.

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	Supporting adult survivors of childhood cancer Kevin Oeffinger, Memorial Sloan Kettering Cancer Center
	Survivor perspective Melinda Marchiano
	Group Discussion
5:15 pm	Wrap-Up Day 1 and Adjourn

March 10, 2015

7:30 am	Registration
8:00 am	Session 5: Enhancing Pediatric Cancer Research and Care Through Patient and Family Engagement, Screening, and Patient-/Parent-Reported Outcomes *Moderator:* Peter Adamson, Children’s Oncology Group
	Instrument/scale development for use across developmental stages Pamela Hinds, Children’s National Health System
	Psychosocial assessment tools and the pediatric psychosocial preventative health model Anne Kazak, Nemours Children’s Health System
	Distress screening requirements Paul Jacobsen, H. Lee Moffitt Cancer Center
	Group Discussion
9:45 am	Break

Page 106 Cite

Suggested Citation:"Appendix." National Academies of Sciences, Engineering, and Medicine. 2015. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. Washington, DC: The National Academies Press. doi: 10.17226/21754.

×

10:00 am	Session 6: Pediatric Oncology Data Collection and Registries—Measuring, Documenting, and Reporting on Treatment Impact *Moderator:* Lori Minasian, NCI
	Future directions for coordination and standardization of data collection/outcomes measurement in pediatric oncology Richard Aplenc, The Children’s Hospital of Philadelphia
	Measures of poverty prevalence in pediatric oncology families and screening tool design for identifying at-risk families Kira Bona, Dana-Farber Cancer Institute
	Exemplars from adult and pediatric cancer care Bryce Reeve, University of North Carolina at Chapel Hill
	Registries for children treated with radiation therapy Torunn Yock, Massachusetts General Hospital, Harvard Medical School
	Group Discussion
11:30 am	Workshop Wrap-Up and Next Steps Otis Brawley Joanne Wolfe
11:45 am	Adjourn

Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society (2015)

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