Cancer Survivorship InformationResources from the US GovernmentSanjay Koyani, MPH, CHES

Health Education Specialist, Office of Cancer Information, Communication, and Education, Patient Education Branch, National Cancer Institute,Bethesda, Maryland

Approximately eight million Americans alive today havea history of cancer,1 and as treatment improves this

population will continue to grow.2 The number of issuesthese cancer survivors face brings a variety of challenges tosurvivors, their families, and the health professionals whocare for them. Health professionals, trusted and relied on bycancer survivors, must assess and respond to these complexissues. To do so, professionals must be aware of the educa-tional process that involves identifying information re-sources, knowing when it is appropriate to provide thisinformation, and delivering it with sensitivity.

This article focuses on the first part of the process,identifying information resources, and it is designed to in-troduce electronic, print, and telephone resources availablefrom US Government agencies that may be useful to healthprofessionals in their work with cancer survivors andfamilies.

Where to Start

Cancer survivor issues are many and complex, typicallyoccurring in interrelated clusters that shift and changethroughout the survivor’s life with the diagnosis of cancer,after the diagnosis, or both. Survivorship issues can includephysiological, psychosocial, spiritual, employment, insur-ance, financial, and legal issues. To help professionals andsurvivors address these issues, numerous organizations pro-vide education and information resources. While there aremany quality resources available from professional associa-tions, US Government agencies can serve as a good starting

point for up-to-date, credible, and accurate information. Forexample, the Department of Health and Human Servicessponsors Healthfinder, a Web site that provides a front doorto health information from the US government and fromprivate and nonprofit groups. All electronic resources—Web sites, interactive materials, self-help groups, and clear-inghouses—undergo peer review before being added to thesite. A search on the topic “cancer” results in a variety ofuseful cancer resources and organizations.

Table 1 highlights electronic, telephone, and print re-sources from select government agencies. These resourceswere identified via an extensive review of the literature,online databases, and the Internet. Health professionals areencouraged to become familiar with these resources and torefer their patients and colleagues to them, as well as toactively identify other sources for survivorship information.

Other Sources

Many resources currently exist beyond those of the USGovernment, and many more will be developed as survivorissues are researched. In particular, the Internet is an effec-tive source for information. However, as a note of caution,Web sites should be reviewed frequently to ensure theiraccuracy and timeliness before colleagues and cancer sur-vivors are referred to them.

References

1. American Cancer Society. Cancer Facts and Figures—1998.Atlanta, Ga: American Cancer Society; 1998.

2. Klausner R. The National Investment in Cancer Research.Bethesda, Md: National Cancer Institute; 1997:20.

3. National Cancer Institute. The Cancer Journey: Issues for Sur-vivors, Leader’s Guide. NIH publication no. 98-4259.Bethesda, Md: National Cancer Institute; 1998.

Department Editors: Marie M. Lauria, MSW, CCSW; Marion E.Morra, MA, ScD; and Claudette Varricchio, RN, DSN, OCN.

Queries and contributions for Patient Resources may be sentto the Department Editors at Cancer Practice, American CancerSociety, 1180 Avenue of the Americas, New York, NY 10036.

154 CANCER PRACTICE May/June 1999, Vol. 7, No. 3© American Cancer Society 1065-4704/99/$14.00/154 154–156

Patient Resources

Table 1. US Government Agencies: Select Information and Education Resources for Cancer Survivorsand Professionals

Administration on Aging (AOA)Internet: http://www.aoa.dhhs.gov

Connects to information on community services for seniors, caregiving,managing prescription medications, legal hotlines, and links to insuranceinformation.

Agency for Health Care Policy and Research (AHCPR)Internet: http://www.ahcpr.govPhone: 1-800-358-9295

888-586-6340 TDD service

Provides access to clinical practice guidelines, such as managingcancer pain, and information on health insurance and access tocare. Publications can be accessed via the Internet or by phoneand include “Managing Cancer Pain: Adults. Quick ReferenceGuide for Clinicians,” “Managing Cancer Pain. Patient Guide,”and “Effect of Employment-Related Health Insurance on JobMobility.”

Centers for Disease Control and Prevention (CDC)Internet: http://www.cdc.gov/other.htmPhone: 1-800-311-3435

Provides contact information about state and local health departments thatmay provide cancer survivorship resources and services.

Combined Health Information Database: US Federal GovernmentInternet: http://chid.nih.gov

Provides titles, abstracts, and ordering information for health educationalresources from organizations throughout the country. Topics includecancer pain, fatigue, palliative care, and other survivorship issues.

Department of Health and Human ServicesInternet: http://www.healthfinder.gov(Healthfinder™)

Provides a front door to consumer information from the US Governmenton Web sites, online publications, databases, clearinghouses, and supportand self-help groups, as well as government agencies and not-for-profitorganizations.

Department of Defense (DOD)Internet: http://www.tricare.osd.mil

Connects to military healthcare insurance information, benefits, andprograms available through the DOD. Includes links to DoD Webresources such as the Breast Cancer Decision Guide(http://www.bcdg.org/index.htm). This resource allows users to search forgeneral breast cancer information, or obtain a personalized interactiveconsultation online.

Department of JusticeInternet: http://www.usdoj.gov/crt/ada/adahom1.htmPhone: 1-800-514-0301 (Americans with Disabilities Line)

1-800-514-0383 TDD

Provides information about the Americans with Disabilities Act, includingnew and proposed regulations, ADA mediation, and technical assistancematerials.

Department of LaborInternet: http://www.dol.gov/dol/wb/public/wb_pubs/fmla.htmPhone: 1-800-827-5335 (Women’s Bureau)

1-800-326-2577 TDD

Provides information about individuals rights under the Family andMedical Leave Act.

Department of TransportationInternet: http://www.fta.dot.gov/office/civilPhone: 1-888-446-4511

1-800-877-8339 TDD

Transit Authority assistance. Also, provides information about publictransportation for persons with disabilities.

Transportation—legal questions.Phone: 1-202-366-4011

Department of Veteran AffairsInternet: http://www.va.gov/Phone: 1-800-827-1000

Provides information on VA programs, veterans benefits, and VA facilitiesworldwide. Serves veterans and their dependents.

Equal Employment Opportunity Commission (EEOC)Internet: http://www.eeoc.govPhone: 1-800-669-4000

1-800-669-TDD

Provides information on equal employment laws, as well as technicalassistance on the ADA provisions applying to employment. Also providesinformation on how to file ADA complaints.

Food and Drug Administration, Cancer Liaison ProgramInternet: http://www.fda.gov/oashi/cancer/cancer.htmlPhone: 1-301-827-4460

Provides information about cancer resources within FDA and other federalagencies, and the private sector; educates patients about the FDA drugapproval process, cancer clinical trials and access to investigationaltherapies.

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Table 1. (Continued)

Health Care Financing Administration (HCFA)Internet: http://hcfa.govPhone: 1-800-318-2596

Provides general Medicare, Medicaid, and Children’s Health InsuranceProgram information, as well as laws and regulations affecting survivors,including the Health Insurance Portability and Accountability Act andadvance Directives. Publications—like “Medicare Hospice Benefits,”“Advance Directives,” and “1998 Guide to Health Insurance Benefits forPeople with Medicare”—can be accessed via the Internet or by phone.

National Cancer Institute (NCI)Internet: http://www.nci.nih.gov (main NCI Web site)Phone: 1-800-4-CANCER (Cancer Information Service)

1-800-332-8615 TTY

Cancer patient education publications are available on a variety of topics,including: “Advanced Cancer,” “Chemotherapy and You,” “Eating Hints,”“Facing Forward: A Guide for Cancer Survivors,” “Questions and AnswersAbout Pain Control,” “Radiation Therapy and You,” “Taking Time,”“When Cancer Recurs,” “When Someone in Your Familly Has Cancer,”and “Young People with Cancer.” These are available via the NCI Web siteand phone number. A cancer survivorship training program for profes-sionals, “The Cancer Journey: Issues for Survivors,” is also available bycalling 1-800-4-CANCER. Specific Web sites and telephone services include:

Cancer Information ServicePhone: 1-800-4-CANCERInternet: http://cis.nci.nih.gov

Provides the latest, most accurate cancer information for patients, theirfamilies, the general public, and health professionals.

CancerNet™Internet: http://cancernet.nci.nih.gov

Contains information about cancer treatment, supportive care, screening,prevention, and clinical trials. Links to CANCERLITt(http://cnetdb.nci.nih.gov/overview.html), which contains more than 1.4million citations and abstracts from over 4000 different sources, includingbiomedical journals, proceedings, book reports, and doctoral theses.

CancerTrials™Internet: http://cancerTrials.nci.nih.gov

Provides comprehensive clinical trials information on understanding trials,finding specific trials, plus research news and other resources.

PDQt/CANCERLITt Service CenterPhone: 1-800-345-3300

Provides customized searches from NCI’s PDQ and CANCERLIT database tohealth professionals. PDQ is a comprehensive, computerized cancerinformation database.

National Center for Complementary and Alternative MedicineInternet: http://altmed.od.nih.gov/nccam/Phone: 1-888-644-6226

1-888-644-6226 TTY/TDY

Disseminates information on complementary and alternative (CAM)medicine to practitioners and the public. Web site provides access to aCAM index consisting of more than 90,000 bibliographic citations from1966 to 1997.

National Library of Medicine (NLM)Internet: http://medlineplus.nlm.nih.gov/medlineplusPhone: 1-888-346-3656

NLM’s MEDLINEplus Web site includes links to information about anumber of health topics, medical dictionaries, databases (includingMEDLINE), clearinghouses, directories, organizations, publications andhealth news, and consumer health libraries. The phone number providesinformation on NLM programs and services.

National Network Libraries of Medicine (NNLM)Phone: 1-800-338-7657

NNLM routes callers to regional NLM libraries, which can provideassistance with research.

Office of Minority Health Resource Center (OMH-RC)Phone: 1-800-444-6472

1-301-589-0951 (TDD)

Provides information relating to health resources at federal, state, andlocal levels, including database searches on minority health publicationsand programs.

Office of Women’s Health (OWH)Internet: http://www.4woman.org/owh/index.htmPhone: 1-800-994-WOMAN

Serves as a focal point for women’s health activities within DHHS.Includes information on available cancer programs, resources, andorganizations.

National Action Plan on Breast Cancer (NAPBC)Internet: http://www.napbc.org

Government-private partnership, under the direction of OWH, thatidentifies priorities and strategies for progress in breast cancer. Includeslinks to government/advocacy resources, newsgroups/listservs, medicalinformation, and support groups.

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