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Care for Children and Adolescents With Cancer: Questions and Answers 

Survival rates for childhood cancer have risen sharply over the past 25 years. In the United 

States, more than 80 percent of children with cancer are alive 5 years after diagnosis, compared 

with about 62 percent in the mid-1970s (1). Much of this dramatic improvement is due to the 

development of improved therapies at children’s cancer centers, where the majority of children 

with cancer have their treatment. 

1. What are children’s cancer centers? 

Children’s cancer centers are hospitals or units in hospitals that specialize in the 

diagnosis and treatment of cancer in children and adolescents. Most children’s, or 

pediatric, cancer centers treat patients up to the age of 20. 

Key Points 

• Children’s cancer centers are hospitals or units in hospitals that 

specialize in the diagnosis and treatment of cancer in children and 

adolescents (see Question 1). 

• Several groups have established standards for children’s cancer centers 

or programs (see Question 2). 

• Children with cancer can receive treatment in clinical trials (research 

studies) at the National Institutes of Health Clinical Center in Bethesda, 

Maryland (see Question 9). 

• A child’s pediatrician or family doctor often can provide a referral to a 

children’s cancer center (see Question 10). 

• Organizations are available to offer support to families, including help 

with transportation, lodging, and financial assistance (see Question 11). 
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2. Are there standards for children’s cancer centers? 

The following groups have established standards for children’s cancer centers or 

programs: 

• The National Cancer Institute (NCI)-sponsored Children’s Oncology Group (COG), 

formerly two separate groups known as the Children’s Cancer Group (CCG) and the 

Pediatric Oncology Group (POG), is a network of children’s cancer centers that meet 

strict quality assurance standards. The COG Web site can be found at 

http://www.childrensoncologygroup.org/ on the Internet. 

• The American Academy of Pediatrics (AAP) updated its Guidelines for Pediatric 

Cancer Centers in 2004. This document describes the personnel and facilities needed 

to provide state-of-the-art care for children and adolescents with cancer. This policy 

statement is available at 

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;113/6/1833 on the 

Internet. 

• The American Society of Pediatric Hematology/Oncology (ASPHO) established 

standard requirements for programs treating children with cancer and blood disorders. 

The ASPHO Web site is available at 

http://www.aspho.org/i4a/pages/index.cfm?pageid=1 on the Internet. 

These groups agree that a childhood cancer center should be staffed by a team of trained 

pediatric oncologists (doctors who specialize in childhood cancer) and other specialists. 

Other members of the health professional team usually include pediatric surgeons, 

specialist surgeons (e.g., neurosurgeons and urologic surgeons), radiation oncologists, 

pathologists, nurses, consulting pediatric specialists, psychiatrists, oncology social 

workers, nutritionists, and home health care professionals—all with expertise in treating 

children and adolescents with cancer. Together, these professionals offer comprehensive 

care. 

3. Why might a family look for a specialized children’s cancer center when a child or 

adolescent is diagnosed with cancer? 

Because childhood cancer is relatively rare, it is important to seek treatment in centers 

that specialize in the treatment of children with cancer. Specialized cancer programs at 

comprehensive, multidisciplinary cancer centers follow established protocols 

(step-by-step guidelines for treatment). These protocols are carried out using a team 

approach. The team of health professionals is involved in designing the appropriate 

treatment and support program for the child and the child’s family. In addition, these 

centers participate in specially designed and monitored research studies that help develop 

more effective treatments and address issues of long-term childhood cancer survival. 
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4. When children go to a specialized cancer center, does it mean their treatment will be 

part of a research study? 

Not necessarily. Participation in research studies is always voluntary. Parents and 

patients may choose to receive treatment as part of a clinical trial (research study); only 

patients and parents who wish to do so take part. However, a large number of children 

who go to pediatric cancer centers take part in clinical trials. About 55 to 65 percent of 

children diagnosed with cancer by or before age 14 enter an NCI-sponsored clinical trial. 

However, this percentage decreases to about 10 percent for children diagnosed between 

ages 15 and 19. 

5. What is a clinical trial or research study?

In cancer research, a clinical trial is a study designed to show how a particular 

strategy—for instance, a promising anticancer drug, a new diagnostic test, or a possible 

way to prevent cancer—affects the people who receive it. 

Treatment clinical studies fall into three categories: 

• Phase I studies evaluate what dose is safe, how a new drug should be given (e.g., by 

mouth, injected into a vein, or injected into the muscle), and how often. Phase I trials 

usually include a small number of patients and take place at only one or a few 

locations. 

• Phase II studies investigate the safety and effectiveness of the treatment and how it 

affects the human body. Phase II clinical trials usually focus on a particular type of 

cancer and include fewer than 100 patients. 

• Phase III studies, which usually involve a larger number of patients at many 

locations, compare the new treatment (or new use of a standard one) with the current 

standard therapy (see below). 

6. What are the benefits of taking part in a clinical trial?

One advantage is the possibility that a new treatment (or diagnostic test or preventive 

measure) will turn out to be better than a more established method. Patients who take 

part in approaches that prove to be better have the first chance to benefit from them. In 

phase III clinical trials, in which one treatment is compared with another, patients receive 

either the most advanced and accepted treatment for the kind of cancer they 

have—known as the “standard” treatment—or a new treatment that has shown promise of 

being at least as beneficial as the standard treatment. 

People who take part in clinical trials receive specialized care under a very precise set of 

directions, or protocol. To ensure quality care, highly trained and experienced cancer 

specialists design, review, and approve each protocol. In addition, all participants in 
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clinical trials are carefully monitored during the study and are followed afterwards. 

Participants are often included in a network of clinical trials carried out around the 

country. In this network, doctors and researchers share their ideas and experience, and 

patients receive the benefit of the shared knowledge. 

7. What are the risks of taking part in a clinical trial? 

Clinical trials can involve risks as well as benefits. All cancer treatments have side 

effects, but treatments being studied may have side effects that are not yet understood as 

well as the side effects of standard treatments. The potential risks and benefits of each 

study are explained during the informed consent process, when patients and families 

discuss all aspects of the study with their doctors or nurses before deciding whether to 

participate. 

8. What about costs? Do insurance or managed care plans cover treatment at a 

children’s cancer center? 

Some health plans cover part or all of the cost of care at children’s cancer centers, but 

benefits vary from plan to plan. Questions or concerns about health care costs should be 

discussed with a medical social worker or the hospital or clinic billing office. Financial 

assistance and resources to cover health care costs may be available. 

9. Can children with cancer be treated at the National Cancer Institute? 

 Children with cancer can receive treatment in clinical trials at the National Institutes of 

Health (NIH) Clinical Center in Bethesda, Maryland. Two branches of the NCI that 

study specific types of cancer have their own contact points: 

• The Pediatric Oncology Branch (POB) conducts clinical trials for a wide variety of 

childhood cancers at the NIH Clinical Center. To refer children, teenagers, or young 

adults, the patient’s health care provider should contact the POB office at 

1–877–624–4878 between 8:30 a.m. and 5:00 p.m., Eastern time. The attending 

physician will discuss the case with the patient’s health care provider, determine 

eligibility for treatment under a clinical protocol, and help arrange the referral. Once 

the patient has been accepted for evaluation, a social worker from the POB will 

contact the family and provide information on the study, as well as details about 

travel and lodging. Attending physicians in the POB are also available to provide a 

second opinion. The patient, family member, or health care provider can contact the 

POB to talk about a diagnosis or treatment plan. More information about the POB 

can be found at http://home.ccr.cancer.gov/oncology/pediatric/ on the Internet. 

• The Neuro-Oncology Branch offers clinical trials as well as consultations for 

children with brain tumors. Staff can provide a second opinion for doctors, patients, 

and family members who are interested in this service. Specialists can either evaluate 

the patient in person or review the patient’s medical records and scans. 
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To find out more about this service, and what information is needed, contact the 

Neuro-Oncology Branch at 301–594–6767 or 1–866–251–9686 (toll-free) between 

9:00 a.m. and 6:00 p.m., Eastern time. The Branch’s Web site can be found at 

http://home.ccr.cancer.gov/nob/default.asp on the Internet. 

10. How does a family find a children’s cancer center? 

A child’s pediatrician or family doctor often can provide a referral to a children’s cancer 

center. Families and health professionals can also call the NCI’s Cancer Information 

Service (CIS) at 1–800–4–CANCER to learn about children’s cancer centers that belong 

to the Children’s Oncology Group (COG). All of the cancer centers that participate in 

these groups have met strict standards of excellence for childhood cancer care. A 

directory of COG institutions by state is also available at 

http://www.curesearch.org/resources/cog.aspx on the Internet. 

11. How do families cope with practical issues like getting to a treatment center and 

finding a place to stay near the center? 

Many families receive helpful information from their doctors and nurses. Treatment 

centers often have social work departments that can provide assistance. In addition, 

various organizations offer support to families, including help with transportation, 

lodging, and financial assistance. Sources of help include the following organizations: 

• Candlelighters® Childhood Cancer Foundation. Candlelighters is an international 

organization of parents whose children have or have had cancer. It offers information 

and assistance to families through a national parent information service, newsletters, 

and other publications. It also has local chapters in many towns and cities around the 

United States which can be important sources of practical information and support for 

families. 

 Address: Candlelighters Childhood Cancer Foundation 

 National Office 

 Post Office Box 498 

 Kensington, MD 20895–0498 

 Telephone: 301–962–3520 or 1–800–366–CCCF (1–800–366–2223) 

 Fax: 301–962–3521 

 E-mail: staff@candlelighters.org 

 Internet Web site: http://www.candlelighters.org 
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• The Leukemia and Lymphoma Society. Financial assistance and consultation 

services for referrals to other means of local support are offered by chapters of the 

Leukemia and Lymphoma Society to patients with leukemia, lymphoma, and 

myeloma. Educational materials for patients and family members are provided 

through local chapters and the Home Office. 

Address: The Leukemia and Lymphoma Society 

 1311 Mamaroneck Avenue 

 White Plains, NY 10605–5221 

 Telephone: 914–949–5213 or 1–800–955–4LSA (1–800–955–4572) 

 Fax: 914–949–6691 

 Internet Web site: http://www.leukemia-lymphoma.org 

• Ronald McDonald House Charities. Many major cities have Ronald McDonald 

Houses where out-of-town families can stay while their children are being treated for 

a serious illness. The room rates are economical. A social worker may be able to 

help locate one, or contact the Ronald McDonald House Coordinator at the address 

below. 

 Address: Ronald McDonald House Charities 

 One Kroc Drive 

 Oak Brook, IL 60523 

 Telephone: 630–623–7048 

 Fax: 630–623–7488 

Internet Web site: http://www.rmhc.com 

• The National Children’s Cancer Society. This independent, national organization 

provides a broad range of services, including financial and in-kind assistance, 

advocacy, support services, and education and prevention programs. 

 Address: The National Children’s Cancer Society 

 Suite 800 

 One South Memorial Drive 

 St. Louis, MO 63102 

 Telephone: 1–800–5–FAMILY (1–800–532–6459) 

 314–241–1600 (Program Services) 

 Fax: 314–241–1996 

 Internet Web site: http://www.nationalchildrenscancersociety.org 
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Selected Reference 

1. Ries LAG, Melbert D, Krapcho M, et al. (eds). SEER Cancer Statistics Review, 

1975–2005. Bethesda, MD: National Cancer Institute. Retrieved April 18, 2008, from 

http://seer.cancer.gov/csr/1975_2005/.

# # # 

Related NCI materials and Web pages: 

• National Cancer Institute Fact Sheet 1.4, NCI’s Clinical Trials Cooperative Group 

Program (http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-trialscooperative-group) 

• National Cancer Institute Fact Sheet 1.22, Cancer Clinical Trials at the National 

Institutes of Health Clinical Center: Questions and Answers 

(http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-center) 

• National Cancer Institute Fact Sheet 2.11, Clinical Trials: Questions and Answers 

 (http://www.cancer.gov/cancertopics/factsheet/Information/clinical-trials) 

• National Cancer Institute Fact Sheet 6.40, Childhood Cancers: Questions and 

Answers (http://www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood) 

• National Cancer Institute Fact Sheet 7.47, How To Find a Doctor or Treatment 

Facility If You Have Cancer 

(http://www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility) 

• Childhood Cancers Home Page 

(http://www.cancer.gov/cancertopics/types/childhoodcancers)

• Young People With Cancer: A Handbook for Parents 

 (http://www.cancer.gov/cancerinfo/youngpeople) 

For more help, contact: 

NCI’s Cancer Information Service 

Telephone (toll-free): 1–800–4–CANCER (1–800–422–6237) 

TTY (toll-free): 1–800–332–8615

 LiveHelp® online chat: https://cissecure.nci.nih.gov/livehelp/welcome.asp

This fact sheet was reviewed on 5/19/08