Comprehensive Cancer Care for Children and Their Families Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society (2015) / Chapter Skim
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Appendix
Appendix
Pages 101-106
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From page 101... ...
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 symp toms 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.
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From page 102... ...
• 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
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From page 103... ...
APPENDIX 103 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
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104 COMPREHENSIVE CANCER CARE 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
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APPENDIX 105 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
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106 COMPREHENSIVE CANCER CARE 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
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