Appendix C

Selected Resources

This appendix presents selected resources for information about childhood cancers, organized alphabetically by organization.

American Association for Cancer Research: Pediatric Oncology Series https://clincancerres.aacrjournals.org/pediatricseries

This series is a special collection of articles from the American Association for Cancer Research Childhood Cancer Predisposition Workshop; it is published in the journal Clinical Cancer Research. The initial series of manuscripts was generated by an international cohort of leading pediatric cancer experts in order to provide recommendations for screening surveillance of childhood cancer predisposition syndromes in an effort to facilitate early detection and treatment of pediatric cancers.

American Society of Clinical Oncology (ASCO): Survivorship Care Compendium https://www.asco.org/practice-policy/cancer-care-initiatives/prevention-survivorship/survivorship/survivorship-compendium

The Survivorship Care Compendium is a collection of tools and resources to assist oncology providers in implementing or improving care for survivors of cancer. The compendium complements the educational opportunities and clinical guidance pertaining to survivorship care that ASCO offers. While recognizing that cancer survivorship begins at diagnosis, the compendium focuses on individuals “who have completed curative treatment or who have transitioned to maintenance or prophylactic therapy.”

ASCO: Guidelines, Tools, and Resources by Clinical Area https://www.asco.org/research-guidelines/quality-guidelines/guidelines

Developed by multidisciplinary panels of experts, which include patient advocates, ASCO’s clinical practice guidelines outline appropriate methods of cancer treatment and care. “Guidelines can address specific clinical situations (disease-oriented) or use of approved medical products, procedures, or tests (modality-oriented).”

Children’s Oncology Group (COG) https://www.childrensoncologygroup.org

The COG is an international clinical trials group devoted exclusively to childhood and adolescent cancer research. COG clinical trials include front-line treatment for many types of childhood cancers; studies aimed at determining the underlying biology of these diseases; and trials involving new and emerging treatments, supportive care, and survivorship. The COG is supported by the National Cancer Institute (NCI) and involves thousands of childhood cancer experts at more than 200 leading children’s hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe.

COG: Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers http://www.survivorshipguidelines.org

These COG guidelines serve as a resource for health care professionals who provide ongoing care to survivors of childhood cancer. The guidelines include screening recommendations for asymptomatic survivors of childhood, adolescent, and young adult cancer who are being seen for routine exposure-based medical follow-up. More extensive, clinically indicated evaluations are presumed for survivors with signs and symptoms of illness or organ dysfunction. The guidelines assume basic knowledge of the long-term follow-up needs of survivors of childhood cancer. Health care professionals who do not regularly care for this patient population “are encouraged to consult with a pediatric oncology long-term follow-up center if any questions or concerns arise when reviewing or using these guidelines.” Patient education materials (“Health Links”) are available to enhance patient follow-up visits.

COG: Supportive Care Endorsed Guidelines https://childrensoncologygroup.org/index.php/cog-supportive-care-endorsed-guidelines

These COG guidelines are evidence-based guidelines for supportive care and are linked to each COG protocol.

Mattie Miracle Cancer Foundation: Standards for the Psychosocial Care of Children with Cancer and Their Families https://www.mattiemiracle.com/downloadstandards

These evidence-based standards were developed by an interdisciplinary group of experts and stakeholders from the United States, Canada, and the Netherlands. From an initial review of more than 13,000 peer-reviewed articles, 1,217 were selected for their rigor and used to develop the standards of care. For each standard, the AGREE II (Appraisal of Guidelines for Research & Evaluation II) process was used to evaluate the quality of the evidence, and the standards were assessed using the GRADE (Grading of Recommendations Assessment, Development and Evaluation) methodology to determine the quality of evidence and strength of recommendations. The standards define the psychosocial support needed by children with cancer and their families from the time of diagnosis through survivorship or end of life and bereavement care.

National Cancer Institute (NCI): NCI Dictionary of Cancer Terms https://www.cancer.gov/publications/dictionaries/cancer-terms

The NCI dictionary allows users to search the database for definitions by keywords or phrases or to browse alphabetically through 8,547 terms related to cancer and medicine.

NCI: Surveillance, Epidemiology, and End Results (SEER) Program https://seer.cancer.gov

NCI’s SEER Program provides authoritative information about cancer incidence and survival in the United States. “SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 34.6 percent of the U.S. population.… SEER coverage includes 31.9 percent of Whites, 30.0 percent of African Americans, 44.0 percent of Hispanics, 49.3 percent of American Indians and Alaska Natives, 57.5 percent of Asians, and 68.5 percent of Hawaiian/Pacific Islanders.”

“The SEER Program registries routinely collect data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and patient survival data. The mortality data reported by SEER are provided by the National Center for Health Statistics. The population data used in calculating cancer rates is obtained periodically from the Census Bureau. Updated annually and provided as a public service in print and electronic formats, SEER data are used by thousands of researchers, clinicians, public health officials, legislators, policymakers, community groups, and the public.”

PDQ® [Physician Data Query] Pediatric Treatment Editorial Board: PDQ Cancer Information Summaries—Pediatric Treatment https://www.cancer.gov/publications/pdq/information-summaries/pediatric-treatment

This resource is part of the PDQ Cancer Information Summaries, which are comprehensive, evidence-based summaries containing prognostic and treatment information on the major types of cancer in children, as well as information on unusual childhood cancers. They also provide information on supportive and palliative care; screening; prevention; genetics; and integrative, alternative, and complementary therapies. The summaries include information about the strength of the evidence supporting the use of specific interventions or approaches. The PDQ summaries are available in two formats: the patient versions are written in lay language and include links to the NCI Dictionary of Cancer Terms (see above); the health professional versions provide detailed information on prognosis, staging, and treatment for each disease; refer to key citations in the literature; and link to abstracts for the citations. The Pediatric Treatment Editorial Board—one of six PDQ editorial boards comprised of experts in cancer-related specialties—reviews published research findings on a monthly basis and meets seven times per year to review and update information in the summaries.

Pediatric Oncology Series, G. H. Reaman and F. O. Smith, Eds. Switzerland: Springer Nature. ISSN: 1613-5318 https://www.springer.com/series/5421

The Pediatric Oncology series provides up-to-date information on a range of topics, including the diagnosis and treatment of particular cancer types, supportive care, and survivorship care. The series covers the entire spectrum of clinical management, as well as clinical, methodological, and research issues. The series is accessible to pediatricians and general practitioners in addition to pediatric oncologists.