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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.

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.
×

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

 

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.
×

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

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

 

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.
×

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

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

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.
×
Page 101
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.
×
Page 102
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.
×
Page 103
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.
×
Page 104
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.
×
Page 105
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.
×
Page 106
Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society Get This Book
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Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system.

To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children's Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.

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