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.
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
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7:45 am |
Registration |
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8:00 am |
Welcome from the National Cancer Policy Forum (NCPF) and the American Cancer Society (ACS)
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Overview of the Workshop
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8:20 am |
Session 1: The Current Pediatric Oncology Landscape—An Imperative for Change Moderator: Phillip Pizzo, Stanford University |
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Unique clinical and basic science perspectives, and challenges to and opportunities for further treatment advances in pediatric oncology
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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
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The patient and family experience: Critical opportunities to advance progress and improve quality of care
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Group Discussion |
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Opening statements from the parent perspective
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10:15 am |
Break |
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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 |
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Academic perspective on clinical research
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Stakeholder engagement: Practical opportunities and approaches to improve the research and development landscape
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Industry panel on patient- and parent-reported outcome measures: Mechanisms and management as decision points in drug development
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Group Discussion |
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12:30 pm |
Lunch Break |
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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 |
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Current practices for providing pediatric palliative and psychosocial care
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Strategies for improving communication and early integration in all care settings and systems
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Addressing workforce development needs and current gaps in the evidence
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Group Discussion |
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Opening statements from the parent perspective
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3:00 pm |
Break |
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3:15 pm |
Session 4: Improving Care Transitions for Children and Families Across the Continuum Moderator: Eric Sandler, Nemours Children’s Health System |
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Family support through transitions and family/peer influence on adjustment to childhood cancer
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Early-phase transitions in care
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Supporting adult survivors of childhood cancer
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Survivor perspective
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Group Discussion |
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5:15 pm |
Wrap-Up Day 1 and Adjourn |
March 10, 2015
| 7:30 am | Registration |
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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 |
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Instrument/scale development for use across developmental stages
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Psychosocial assessment tools and the pediatric psychosocial preventative health model
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Distress screening requirements
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Group Discussion |
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9:45 am |
Break |
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10:00 am |
Session 6: Pediatric Oncology Data Collection and Registries—Measuring, Documenting, and Reporting on Treatment Impact Moderator: Lori Minasian, NCI |
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Future directions for coordination and standardization of data collection/outcomes measurement in pediatric oncology
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Measures of poverty prevalence in pediatric oncology families and screening tool design for identifying at-risk families
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Exemplars from adult and pediatric cancer care
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Registries for children treated with radiation therapy
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Group Discussion |
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11:30 am |
Workshop Wrap-Up and Next Steps
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11:45 am |
Adjourn |
