Comprehensive cancer care for children and their families : summary of a joint workshop by the Institute of Medicine and the American Cancer Society [E-Book]

Title from PDF title page.

Includes bibliographical references.

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.

This activity was co-sponsored by the American Cancer Society. The project was also supported by Contract No. HHSN261200900003C and Contract No. HHSN263201200074I (Task Order No. HHSN26300052) between the National Academy of Sciences and the Centers for Disease Control and Prevention and the National Cancer Institute/National Institutes of Health, respectively, and by the American Association for Cancer Research, American Society for Radiation Oncology, American Society of Clinical Oncology, American Society of Hematology, Association of American Cancer Institutes, AstraZeneca, Bristol-Myers Squibb, C-Change, Cancer Support Community, CEO Roundtable on Cancer, EMD Serono, Helsinn Healthcare SA, LIVESTRONG Foundation, National Comprehensive Cancer Network, Novartis Oncology, Oncology Nursing Society, and Sanofi Oncology.

Version viewed November 6, 2015.

Overview Of The Current Landscape In Pediatric Cancer Research And Treatment -- Trends and Challenges in Developing Drugs for Pediatric Cancer -- Integrating Pediatric Palliative Care: Ensuring Child And Family Well-Being Along The Continuum -- Generalist Plus Specialist Palliative Care -- End-of-Life Care and Bereavement Care -- The Role of Communication -- Policy Opportunities to Improve Pediatric Palliative Care Across the Care Continuum -- Psychosocial Challenges And Opportunities -- Psychosocial Needs for Pediatric Patients -- Psychosocial Needs of Families -- Predicting and Screening for Distress -- Parental Interventions to Alleviate Distress -- Building Capacity for Psychosocial Care -- Psychosocial Care Standards -- Research Needs -- Detecting Pain And Suffering -- PROs in Clinical Research -- PROs in Clinical Care -- The State of the Science for Pediatric PROs -- Parents as Proxies -- Long-Term Effects -- Predicting Complications -- Screening for and Preventing Complications -- Improving Care Transitions -- Transitioning Off Treatment to Follow-Up Care -- Transitioning to Adult Follow-Up Care -- Supporting Providers -- Supporting Patients -- Models of Survivorship Care -- Research Needs -- Pediatric Oncology Data Collection And Registries -- Integrating Databases for Research -- Pediatric Proton Consortium Registry -- Measuring Poverty and Its Impacts -- Wrap-Up.

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