31.1 introduction. . . . 469 31.2 the alue of Sharing Medical information. . . 469 31.3 Methods of Sharing Medically related
information.. . . . 470 31.4 the expanding role of internet-Based Health
and Medical information resources .. . . . 470 31.5 Using this chapter. . . . 471 references . . . .486
31.1 introduction
In the 1970s and 1980s, the popular American educa- tional television series called “School House Rock!”
inspired children and teens with its slogan, “Knowl- edge is Power” [1]. For today’s young adult cancer patients and survivors, that aphorism remains as true now as it was when many of them first discovered the value of learning through the program’s catchy songs.
As elaborated by Ruccione, successful cancer survivor- ship addresses the concerns of normalization, living with uncertainty, living with compromise, and over- coming stigma [2]. This requires that healthcare pro- fessionals work closely with survivors, their families, and support and advocacy organizations to create a
“partnership of empowerment” [3]. It would stand to reason that this involves providing survivors with information concerning their underlying disease, potential medical complications, a range of related psychosocial and financial issues, and available resources. Because information represents knowledge acquired in any manner [4], knowledge is indeed power in the realm of cancer survivorship.
31.2 the alue of Sharing Medical information
Providing information is beneficial to cancer patients.
Studies indicate that nearly 90% of adults with cancer desire maximal information across the continuum of their care [4–6]. Chelf and colleagues reviewed empirical studies that demonstrate measurable ben-
David.R .Freyer.•.Leonard.J .Mattano
information and resources for young adults
and adolescents with cancer
contents
efits from providing cancer patients with information in the areas of treatment decision-making, under- standing about treatment, and management of pain and fatigue [4]. Obtaining information is a key cop- ing strategy for some cancer patients [7] and may decrease anxiety through an enhanced sense of con- trol [4]. Yet, in a large, recent study of adult cancer survivors conducted by the Office of Cancer Survi- vorship at the United States National Cancer Institute (US-NCI), Hewitt and colleagues [8] found that only 58% had received patient education materials from their healthcare providers (94% of whom found them to be helpful). Only 10.9% had direct contact with major cancer organizations such as the US-NCI or the American Cancer Society.
31.3 Methods of Sharing Medically related information
There are several effective methods for delivering information to cancer patients. Face-to-face verbal contact between patient and healthcare team is widely agreed to be the cornerstone and the “gold standard”
for information sharing. Several studies confirm that healthcare providers are the major and preferred sources of information for cancer patients [4, 5, 9, 10].
In addition to allowing for an exchange of informa- tion, direct contact achieves the other aims of medical communication, which are to create a good interper- sonal relationship and facilitate medical decision-mak- ing [11]. At the same time, research indicates that ver- bal communication is enhanced if supplemented appropriately with effective materials [4, 9, 12]. These may include written materials (booklets, pamphlets, brochures, books, monographs, and photocopied arti- cles), audio-visual aids (video or audio tapes, DVDs), and computer-based approaches (interactive learning modules and utilization of the World-Wide Web, or Internet). Regardless of the modality used, the caveats summarized by Mills and Sullivan [9] concerning writ- ten materials are applicable to all of them. Supplemen- tal information should: (1) reinforce rather than intro- duce critical new ideas; (2) be accurate and current; (3) address the actual concerns of patients; (4) be pre- sented in a style and at an educational level that can be
understood by patients; and (5) be of high quality and presented in an appealing way.
31.4 the expanding role of internet-Based Health and Medical information resources
The vast repository of information accessible on the Internet has a prominent role for persons seeking health and medical information. According to a recent survey conducted by the Harris poll, 69% of American adults go on-line from home, work, school, the library or elsewhere [13]. The same survey found that 51%
(111 million adults) have ever looked for health-related information on-line, and 35% had done so within the previous month [13]. In a previous survey, it was found that young adults aged 18 to 29 years old accounted for the largest proportion of American adults who go on- line [14]. In that survey, Internet users tended to be Caucasian (76%), have some post-high-school educa- tion (63%), and be relatively affluent (46% with an annual income of greater than US$50,000).
The Internet is also a major source of health-related information for cancer patients. In two recent studies conducted in the United States [15] and Canada [5], approximately 50% of adult cancer patients obtained information from the Internet. This was supplemented with printed resources by 79% of the Internet users [15]. In a study of Internet use among a cohort of adults with lung cancer, an association was found with educational level and income [10].
A recent study from the United Kingdom by Zieb-
land and colleagues [16] suggests that Internet use
serves several valuable functions for oncology patients,
especially for young adults and including those who
are post-treatment. One hundred and seventy-five
men and women aged 18 to 83 years with cancer of the
breast, bowel, cervix, prostate, or testicle were inter-
viewed. Subjects were recruited from all stages of man-
agement (from diagnosis through to long-term follow-
up). On average, 44% of patients or their friends and
family accessed the Internet (range 26 to 59% across
the five diagnostic groups). The highest Internet use
was noted in the diagnostic groups having the young-
est subjects: testicle (59%), breast (51%), and cervix
(48%). Valuable qualitative data were collected indi- cating why subjects found the Internet helpful. The main reasons given for using the Internet related to privacy, round-the-clock access, and the ability to search for different types and levels of information as and when needed. The main reasons given by those who did not use the Internet related to a lack of home computer access, and technological unfamiliarity. The Internet was used by these cancer patients during all phases of their illness, including short- and long-term follow-up. Immediately posttreatment, information most frequently sought concerned side effects, reas- surance about symptoms and advice on finances. In long-term follow-up, survivors desired to share expe- rience and advice, to contact support groups and to become active in cancer advocacy [16].
Despite its clear value for some, direct information seeking on the Internet by cancer patients faces several limitations. As indicated in the Harris poll cited previ- ously, despite enormous growth in recent years, 30% of adults in the United States are still not on-line and the percentage of users may have reached a plateau [13].
While demographic studies indicate that most users are younger (which could imply a greater comfort level with the technology that will persist with age), they also reveal them to be Caucasian, relatively affluent,
and better educated [13, 17]. Finally, studies have doc- umented concerns about the quality of health infor- mation contained on the Internet, in terms of difficulty encountered in searching for relevant information;
bias and inaccuracy of key clinical elements in some websites; and the relatively high-grade level of reading needed to understand them [18, 19]. Biermann [20]
has drawn attention to the fact that consumers tend to judge health information websites by their “net appeal”
(attractiveness of the site) rather than their content.
To address the above concerns and assist patients in searching the Internet for medical information, crite- ria have been developed for judging the quality of health-related websites and the information they con- tain (summarized in Table 31.1).
31.5 Using this chapter
This chapter provides the healthcare professional with a selection of websites (and, by extension, other infor- mation obtainable through those websites) that may be shared with their young adult and adolescent survi- vors of childhood cancer, in order to provide them with appropriate medical care, health-related informa- tion, and other resources. It should be noted that the
table 31.1 Criteria.for.evaluating.medical.and.health.information.websites
Health on the net Foundation:
eight principles in code of conducta national cancer institute:
“ten things to know about evaluating medical resources on the Web”b
1 .Authority
Any.medical.advice.is.provided.only.by.medically.trained.
and.qualified.professionals.unless.a.clear.statement.
made.to.contrary
1 .Who.runs.the.site?
Those responsible for the site should be clearly indicated.
2 .Complementarity
Information is designed to support, not replace, the relationship between the patient and existing physician.
2 .Who.pays.for.the.site?
The source of a site’s funding should be clearly stated. Does it sell advertising? Is it sponsored by a company with a financial interest in the product or information presented?
3 .Confidentiality
Confidentiality of personal identity and data of patient are fully respected.
3 .What.is.the.purpose.of.the.site?
Related to who runs and pays for the site, the purpose of the site should be clearly stated and will help evaluate the trustworthiness of information. Check the “About This Site”
link.
Health on the net Foundation:
eight principles in code of conducta national cancer institute:
“ten things to know about evaluating medical resources on the Web”b
4 .Attribution
Information is supported by clear references to source data with direct links where possible.
4 .Where.does.the.information.come.from?
Many health and medical sites post information from other sites. If the information is not original, this should be clearly indicated.
5 .Justifiability
Any claims relating to benefits of a specific treatment, commercial product or service should be supported by appropriate, balanced data with sources cited.
5 .What.is.the.basis.of.the.information?
In addition to identifying the author, the evidence for material presented should be described. Medical facts and figures should be referenced. Opinions and advice should be clearly distinguished from evidence-based conclusions.
6 .Transparency.of.authorship
Information should be provided in the clearest possible manner. Contact addresses should be clearly provided if site visitors wish to obtain more information.
6 .How.is.the.information.selected?
Is there an editorial board? Is material reviewed by persons with excellent credentials before it is posted?
7 .Transparency.of.sponsorship
Support for the site should be clearly identified, including all organizations that have contributed funding.
7 .How.current.is.the.information?
Health and medical websites should be reviewed for currency and accuracy on a regular, frequent basis indicated by the date.
8 .Honesty.in.advertising.and.editorial.policy
A clear statement about advertising as a source of funding should be made, if applicable. A brief description of the advertising policy should be displayed on the site. A clear distinction should be made between advertising or promotional material and the original content provided by the organization operating the site.
8 .How.does.the.site.choose.links.to.other.sites?
Check the site’s policy for choosing links. Some may link to any site that asks or pays for a link, whereas others link only to those meeting certain criteria.
9 .What.information.about.you.does.the.site.collect,.and.
why?Many sites routinely track visits to determine which pages are being used most. Others may ask a visitor to “subscribe”
or “become a member.” This may require paying a fee or revealing personal information. Any credible site will indicate exactly what will be done with the information. Be certain to understand the privacy policy, which should be stated clearly. Don’t sign up for anything that is not fully understood.
10 .How.does.the.site.manage.interactions.with.visitors?
There should always be a way to contact the site operators with problems, feedback and questions. Are chat rooms or discussions moderated by an expert? Spend some time reading the discussion before becoming a participant.
aAvailable.at:.http://www hon ch/HONcode/Conduct html.
bAvailable.at:.http://cancer gov/cancerinfo/ten-things-to-know table 31.1 (continued)
information available through these websites is meant to be shared in the context of an educational approach appropriate for each patient’s needs, comprehension, learning style, and available resources.
Information available through these websites has been grouped into five categories: resources for obtain- ing appropriate medical care (Table 31.2; for assistance in locating qualified providers of cancer treatment and follow-up services for young adults and adolescents);
resources for medical information (Table 31.3; for finding specific, detailed information related to cancer treatment and its long-term side effects); Resources for
Financial Information and Assistance (Table 4; forassisting survivors with issues related to employment, health and life insurance, and paying for medical care);
Resources for Information on Wellness and Disease Prevention (Table 31.5; for educating survivors on improving personal health and preventing subsequent cancer and other medical problems); and resources for psychosocial issues and survivor advocacy (Table 31.6;
for helping survivors cope with the emotional aspects of cancer and become active in promoting survivor- ship). Although some websites span more than one category, it was felt that this subject-directed approach would make the information most accessible to the reader.
In selecting websites for inclusion, recognized crite- ria for evaluating health and medical websites were applied (Table 31.1). At the same time, the list of web- sites is not represented as being exhaustive, for the ongoing explosion of Web-based health and medical information has made it extremely difficult to create an international compendium that is truly compre- hensive. Excellent websites not listed directly will be available through links within those websites that are.
An emphasis was placed on including websites partic- ularly relevant to the posttreatment survivor in the young adult or adolescent age group. However, in keeping with the US-NCI Office of Cancer Survivor- ship’s definition of survivor (from the time of diagno- sis throughout the balance of that person’s life; National Cancer Policy Board 2003) [21], many of the websites provide information directed toward the patient recently diagnosed or receiving treatment. All websites were accessed for currency in Dec. 2006.
Given the aforementioned caveats about sharing
medically related information, the following points should be considered when utilizing the websites pro- vided in this chapter:
1. What kind of information or resources does the patient need? For most patients – especially soon after diagnosis – the most effective information is that which is carefully chosen by the health profes- sional to supplement verbal communication and address specific needs (as voiced by the patient and/or recognized by the professional). Some ex- perienced patients with on-line skills may wish to explore this list of websites on their own.
2. What modality of information sharing is best for the patient? For some patients, direct access to websites suggested by the health professional may be the most satisfying. For others, written informa- tion or telephone numbers obtained by the health professional through these websites may be more appropriate. Treatment centers may wish to main- tain an inventory of written materials from organi- zations represented in this list of websites.
3. Does the patient have computer access and requi- site skills? A substantial proportion of patients will continue not to have ready access to a computer, Internet service, and/or essential computer skills, and the comfort level for using them. For them, printed materials may be the most appropriate. In many treatment centers, computers with Internet access are now provided routinely for patient use at no charge. Assistance should be available for using them on-site during hours convenient for patients.
Basic Internet training allows some patients to continue their exploration of Web-based resources at home (if they have a computer with Internet access) or in their own communities (through their workplace or a public library).
4. Which team members carry out patient education?
The information provided through these websites
crosses professional disciplines and should be
made available for physicians, mid-level providers,
nurses, and medical social workers to review and
use in their interactions with patients. Ideally, these
professionals should familiarize themselves in
advance with these websites and the information
contained therein.
table 31.2 Resources.for.obtaining.appropriate.medical.care .NCI.National.Cancer.Institute
Website
name Website sponsor
(if different) Summary of information or services provided Website address BMT.infonet Blood.and.Bone.
Marrow.Trans- plant.Informa- tion.Network
Locator.service.for.blood.and.bone.marrow.
transplant.centers.where.long-term.follow-up.
services.or.referrals.will.be.available
www bmtnews org
Cancer.
Council.
Australia
Under.“Information.About.Cancer”.tab,.informa-
tion.for.locating.a.cancer.specialist.in.Australia www cancer org au
CancerIndex Guide.to.Internet.
Resources.for.
Cancer
Broad,.inclusive.website.that.is.uniquely.
international.in.scope,.providing.extensive.links.
to.treatment.and.follow-up.centers.in.many.
countries.around.the.world
www cancerindex org
Candle-
lighters Candlelighters.
Childhood.
Cancer.Founda- tion
Under.“Treatment”.>.“Comprehensive.Follow.Up.
Programs”.tabs,.description.of.benefits.and.
desirable.characteristics.of.comprehensive.long- term.follow-up.clinics .Tips.for.arranging.for.
insurance.coverage.for.evaluation.in.same
www candlelighters org
CTEP.(Clinical.
Trials.
Evaluation.
Program)
National.Cancer.
Institute Links.to.home.pages.of.all.NCI-supported.
cooperative.groups;.useful.for.locating.institu- tions.participating.in.NCI-funded.clinical.trials.
and.providing.follow-up.services.for.young.
adult.and.adolescent.survivors
ctep cancer gov/resources/
coop html
CureSearch Children’s.
Oncology.Group.
and.National.
Childhood.
Cancer.Founda- tion
Under.“Resource.Directory”.tab,.a.geographical.
listing.of.all.Children’s.Oncology.Group.institu- tions.in.the.United.States,.Canada.and.Australia . The.majority.of.these.provide.survivor.services.
to.adolescents.and.some.young.adults .Those.
that.do.not.can.provide.referrals.for.young.adult.
care
www curesearch org
Macmillan.
Cancer Relief Organization.in.the.United.Kingdom.for.patients.
and.health.professionals .Information.includes.
how.to.become.a.Macmillan-affiliated.oncology.
health.professional;.opportunities.for.profes- sional.development;.how.to.provide.a.healing.
care.environment.for.cancer.patients .
www cancerlink org
National.
Coalition.for.
Cancer.
Survivorship
Extensive.website.with.broad.information.and.
multiple.links .Under.“Resource.Guide”.tab,.a.
listing.of.NCI-designated.comprehensive.cancer.
centers.and.other.centers.providing.long-term.
follow-up.services.to.young.adult.survivors
www canceradvocacy org
Patient- Centered.
Guides
O’Reilly.and.
Associates Under.“Childhood.Cancer.Survivors”.>.“Organi- zations”.tabs,.list.of.well-established.survivor.
programs.in.the.United.States.meeting.certain.
criteria.for.inclusion;.list.not.necessarily.
exhaustive
www patientcenters com
Website
name Website sponsor
(if different) Summary of information or services provided Website address Pediatric.
Oncology.
Resource.
Center
List.of.well-established.survivor.programs.in.the.
United.States.meeting.certain.criteria.for.
inclusion;.list.not.necessarily.exhaustive
www acor org/ped-onc/
survivors
uicc-global.
cancer.control International.
Union.Against.
Cancer
Under.“Collaboration”.tab,.contact.information.
for.an.extensive,.international.list.of.member.
institutions.categorized.by.country,.which.may.
be.useful.for.locating.care.providers
www uicc org
table 31.3 Resources.for.obtaining.medical.information
Website
name Website sponsor
(if different) Summary of information or services provided Website address American.
Cancer.
Society
Under.“Survivors”.>.“Support.for.Survivors.and.
Patients”.>.“Support.Programs.and.Services”.
tabs,.access.to.“Tender.Loving.Care”.magazine- catalog.for.information.and.affordable.products.
for.women.coping.with.complications.of.cancer.
treatment,.including.wigs,.hairpieces,.breast.
forms,.prostheses,.bras,.swimwear,.and.more
www cancer org
American.
Dental.
Association
Under.the.“Your.Oral.Health”.tab,.this.official.
website.of.the.American.Dental.Association.
provides.an.extensive.list.of.topics.pertinent.to.
the.cancer.patient
www ada org
BMT.infonet Blood.and.Bone.
Marrow.Trans- plant.Informa- tion.Network
Access.to.multiple.resources.of.importance.to.
blood.and.bone.marrow.transplant.patients.and.
survivors .Locator.service.for.transplant.centers . Database.of.transplant.drugs.and.information.
on.major.side.effects
www bmtnews org
Canadian.
Cancer.
Society
Information.on.specific.cancers;.cancer.encyclo- pedia .On-line.directory.of.over.4,000.cancer- related.services.throughout.Canada
www cancer ca
Cancer.
Council.
Australia
Under.“Information.About.Cancer”.tab,.numer- ous.links.addressing.cancer.and.treatment- related.issues.for.Australian.patients
www cancer org au
Cancer.
Information.
Service
National.Cancer.
Institute Cancer-related.information.and.education.
network.sponsored.by.the.NCI .Toll-free.
numbers.for.personalized,.confidential.
responses.to.specific.questions.about.cancer.
given.in.English.or.Spanish .Under.“Cancer.
Resources”.tab,.links.to.informative.“What.You.
Need.to.Know.About…”.series.of.disease- specific.on-line.monographs
cis nci nih gov table 31.2 (continued)
Website
name Website sponsor
(if different) Summary of information or services provided Website address CancerBACUP Extensive.website.for.patients.in.the.United.
Kingdom.and.mainland.Europe .Under.respec- tive.tabs,.information.about.specific.cancers.and.
treatments .Under.“Treatment”.tab,.includes.
detailed.discussion.of.radiation.therapy.and.side.
effects .Under.“Resources.and.Support”.tab,.
advice.on.dealing.with.numerous.long-term.
side.effects.and.also.fertility.information.and.
recommendations .Currently.has.link.to.
CancerBACUP-sponsored.website.for.teenagers.
that.is.under.construction
www cancerbacup org uk
CancerHelp.
UK Cancer.Research.
UK Detailed.information.about.specific.cancers.and.
treatment .Under.“Cancer.Treatments”.tab,.
informative.discussion.of.long-term.side.effects.
of.radiation.therapy.on.various.body.systems . Suggested.reading.list.available
www cancerhelp org uk
CancerIndex Guide.to.Internet.
Resources.for.
Cancer
Broad,.inclusive.website.that.is.uniquely.
international.in.scope.(a.major.strength.of.site).
providing.extensive.links.to.information.about.
specific.cancers,.treatment.modalities,.and.
short-.and.long-term.side.effects .Information.
offered.in.multiple.languages.for.some.
resources
www cancerindex org
Cancernet
co uk Site.in.the.United.Kingdom.providing.extensive.
information.on.specific.malignancies.and.
conventional.treatment;.alternative,.hormonal,.
and.other.treatments;.and.a.range.of.fertility.
and.sexuality.issues.for.both.women.and.men
www cancernet co uk
Cancer- SourceKids com
Association.of.
Pediatric.
Oncology.Nurses
Under.“Teens”.and.“Learn.About.Cancer”.tabs,.
provides.description.of.malignancies.common.
in.teens.and.children;.and.articles.written.for.
young.people.describing.need.for.follow-up.
care.and.potential.long-term.problems
www cancersourcekids com
Candle-
lighters Candlelighters.
Childhood.
Cancer.
.Foundation
Under.“Treatment”.tab,.information.available.
concerning.treatment.modalities,.numerous.late.
effects.important.for.the.older.childhood.cancer.
survivor
www candlelighters org
Chemocare
com Scott.Hamilton.
and.The.
Cleveland.Clinic.
Foundation
Comprehensive.and.accessible.website.for.
information.about.chemotherapy.and.related.
issues,.including.specific.drugs,.managing.side.
effects.and.maintaining.nutrition .Thorough.
summary.of.complementary.therapy.options
www chemocare com
Childhood.
Cancers National.Cancer.
Institute In-depth.information.on.types.of.childhood.
cancers;.also.numerous.NCI.links.for.topics.
related.to.childhood.cancer.and.treatment
cancer gov/cancerinfo/
types/childhoodcancers table 31.3 (continued)
Website
name Website sponsor
(if different) Summary of information or services provided Website address Coping.with.
Cancer National.Cancer.
Institute In-depth.information.on.dealing.with.a.broad.
range.of.side.effects.resulting.from.cancer.
treatment
cancer gov/cancertopics/
coping
CureSearch Children’s.
Oncology.Group.
and.National.
Childhood.
Cancer.Founda- tion
Under.“After.Treatment”.tab,.concise,.informa- tive,.understandable,.downloadable.summaries.
of.numerous.important.medical.problems.(late.
effects).that.may.affect.some.survivors .Under.
“For.Health.Professionals”.>.“Late.Effects”.tabs,.
comprehensive,.evidence-based.medical.
guidelines.for.long-term.follow-up.care.are.
downloadable
www curesearch org
Facing.
Forward.
Series:.Life.
After.Cancer.
Treatment
National.Cancer.
Institute Comprehensive.discussion.of.follow-up.care.
after.treatment:.what.to.expect,.how.to.make.
the.most.of.it
cancer gov/cancerinfo/.
life-after-treatment
fertileHOPE Comprehensive.website.addressing.the.
challenge.of.infertility.following.cancer.
treatment,.including.medical.information,.
parenthood.options,.resource.directory,.and.
financial.assistance
www fertilehope org
Liddy.Shriver.
Sarcoma.
Initiative
Liddy.Shriver.
Sarcoma.
Initiative
Sarcoma.information.not.readily.available.
elsewhere,.particularly.for.soft-tissue.sarcomas . A.newsletter.(http://liddyshriversarcomainitia- tive org/Newsletters/esun_newsletter htm).
reports.on.recent.medical.literature.and.clinical.
trials
http://liddyshriversarco- mainitiative org/
Livestrong Lance.Armstrong.
Foundation Under.“Physical.Topics”.tab,.description.of.
several.physical.issues.that.may.affect.survivors,.
including.both.male.and.female.infertility.and.
sexual.dysfunction .Healthy.behaviors.and.
physical.rehabilitation.discussed
www livestrong org
Macmillan.
cancer relief Organization.in.the.United.Kingdom.with.
information.on.cancer,.detection,.diagnosis,.and.
treatment;.also.complementary.treatment.
approaches .On-line.directory.of.cancer.leaflets,.
booklets,.books.and.videotapes.endorsed.by.
Macmillan
www cancerlink org
Medline.Plus National.
Institutes.of.
Health
Extensive.website.offering.information,.
directories.of.providers,.links.and.lists.of.
resources.for.a.wide.range.of.health-related.
information .Under.“Health.Topics”.tab,.provides.
comprehensive.information.on.specific.cancers.
and.related.topics
medlineplus gov table 31.3 (continued)
Website
name Website sponsor
(if different) Summary of information or services provided Website address National.
Center.for.
Complemen- tary.and.
Alternative.
Medicine
National.
Institutes.of.
Health
Health.information.and.links.to.resources.about.
complementary.and.alternative.medicines.
(CAM),.specific.alerts.and.advisories,.types.
of.treatments,.and.how.to.evaluate.CAM.
.practitioners
nccam nih gov
National.
Coalition.for.
Cancer.
Survivorship
Under.“Resource.Guide”.and.“Essential.Care”.
tabs,.in-depth.information.on.specific.underly- ing.diagnoses;.medical.management.of.pain.
and.other.major.side.effects.during.and.after.
cancer.treatment.and.more .Much.of.the.
information.is.available.in.non-English.language.
translations
www canceradvocacy org
People.Living.
With.Cancer American.So- ciety.of.Clinical.
Oncology
Under.“Cancer.Type”.tab,.description.of.malig- nancies.common.in.young.adults .Under.
“Coping”.tab,.discussion.of.fertility.following.
cancer.treatment.and.pregnancy.and.cancer,.
with.links.to.additional.resources
www plwc org
PubMed National.Library.
of.Medicine Powerful.search.engine.of.biomedical.literature.
for.health-related.citations.dating.to.the.1950s www ncbi nlm nih gov/
PubMed Quackwatch.–.
Your.Guide.to.
Health.Fraud,.
Quackery.and.
Intelligent.
Decisions
Quackwatch,.Inc . (Stephen.Barret,.
MD)
Topical.website.providing.information.and.
perspectives.to.protect.healthcare.consumers.
from.fraud,.questionable.therapies.and.
misleading.information .Portions.of.site.have.
been.translated.into.languages.other.than.
English
www quackwatch org
Teens.Living.
With.Cancer Melissa’s.Living.
Legacy.Founda- tion.and.
Children’s.
Oncology.Group
Friendly.site.with.language.and.graphics.
designed.for.young.adults.and.teens .Under.
“Cancer.Facts”.tab,.includes.description.of.
common.malignancies.and.their.treatment.in.
teens.and.young.adults;.also.medical.dictionary.
with.understandable.definitions
www teenslivingwithcancer org
Testicular.
Cancer.
Resource.
Center
Association.of.
Cancer.Online.
Resources
Very.complete.site.for.medical.and.related.
information.concerning.this.specific.cancer.of.
teenage.and.young.adult.males,.including.late.
effects
tcrc acor org
Ulman.Cancer.
Fund.for.
Young.Adults
Under.“Treatment.Decision.Tools”.tab,.a.
decision-support.tool.to.assist.young.adults.in.
understanding.treatment.options.and.side.
effects
www ulmanfund org
Young.
Survival.
Coalition
Website.of.international.organization.devoted.
to.supporting.young.women.under.40.years.of.
age.diagnosed.with.breast.cancer .Information.
provided.on.current.treatment,.research,.
community.branches,.and.advocacy
www youngsurvival org table 31.3 (continued)
table 31.4 Resources.for.financial.information.and.assistance
Website
name Website sponsor
(if different) Summary of information or services provided Website address American.
Cancer.
Society
Under.“Survivors”.>.“Support.for.Survivors.and.
Patients”.>.“Support.Programs.and.Services”.
tabs,.access.to.“Taking.Charge.of.Money.
Matters”.workshop.for.dealing.with.financial.
concerns
www cancer org
Cancer.
Survivors.
On.Line
Information.and.additional.links.and.references.
about.financial.assistance,.health.insurance,.
cancer-related.disability,.and.employment.
issues;.includes.summary.of.the.Americans.with.
Disability.Act.as.it.applies.to.cancer.survivors
www cancersurvivors org
CancerBACUP Extensive.website.for.patients.in.the.United.
Kingdom.and.mainland.Europe .Under.
“Resources.and.Support”.tab,.detailed.informa- tion.about.financial.issues,.including.practical.
advice.and.resources.for.assistance
www cancerbacup org uk
CancerCare Under.“Financial.Needs”.tab,.information.and.
links.for.finding.financial.assistance,.including.
programs.offered.by.this.organization
www cancercare org
Cancernet
co uk Information.about.insurance.and.legal.issues.for.
cancer.patients.in.the.United.Kingdom www cancernet co uk Candle-
lighters Childhood.
Cancer.Founda- tion.Canada
Under.“Programs”.tab,.information.on.CCFC.
Bursaries.available.for.survivors.in.Canada.
planning.to.attend.college
www candlelighters ca
Chemocare
com Scott.Hamilton.
and.The.
Cleveland.Clinic.
Foundation
Comprehensive.website.for.information.about.
chemotherapy .Under.“Before.and.After.Chemo”.
tab,.discusses.and.offers.links.about.financial.
assistance.programs.to.help.pay.for.chemother- apy.medications.and.treatments
www chemocare com
Childhood.
Cancer.
Ombudsman.
Program
Childhood.Brain.
Tumor.Founda- tion
Investigation.and.resolution.of.patient-initiated.
complaints.related.to.employment.and.
insurance
www childhoodbraintumor org/ombuds html
CureSearch Children’s.
Oncology.Group.
and.National.
Childhood.Can- cer.Foundation.
Under.“After.Treatment”.tab,.information.about.
specific.insurance.programs.and.for.dealing.
with.insurance.issues.and.denials
www curesearch org
fertileHope Information.and.links.about.insurance.coverage.
of.infertility.and.adoption.services,.and.financial.
assistance.programs.for.fertility.preservation
www fertilehope org
Georgetown.
University.
Health.Policy.
Institute
Extensive.on-line.consumer.guides.for.obtaining.
and.keeping.health.insurance.in.the.United.
States;.information.is.specific.to.all.states.and.
District.of.Columbia
www healthinsuranceinfo net
Website
name Website sponsor
(if different) Summary of information or services provided Website address Henry.J .
Kaiser.Family.
Foundation
Consumer.guide.to.handling.disputes.with.
employer-based.or.private.health.plans www kff org/consumerguide
Leukemia.and.
Lymphoma.
Society
Under.“Patient.Services”.>.“Stay.Informed”.>.
“National.Education.Workshops”.>.“Survivor.
Education.Series”.tabs,.offers.access.to.teaching.
modules.of.the.“Cancer:.Keys.to.Survivorship”.
program,.which.provide.specific.information.
and.suggested.resources.for.addressing.employ- ment.issues,.cancer-based.job.discrimination,.
health.insurance.regulations.and.how.to.obtain.
and.collect.health.insurance.benefits
www leukemia-lymphoma org
Livestrong Lance.Armstrong.
Foundation Under.“Practical.Topics”.tab,.addresses.several.
related.issues.including.employment.discrimina- tion,.health.and.life.insurance,.life.expectancy,.
planning.for.the.future.and.others
www livestrong org
NeedyMeds An.information.source.for.pharmaceutical.
company-sponsored.free.medication.programs.
for.qualified.patients.lacking.insurance .Also.
links.to.discount.pre-scription.card.programs,.
state-sponsored.programs.and.Medicaid.sites.
for.assistance.in.obtaining.medications
www needymeds com
National.
Coalition.for.
Cancer.
Survivorship
Extensive.website .Under.“Essential.Care”.tab,.
wealth.of.detailed.information.regarding.
employment.rights,.maximizing.health.insur- ance.benefits,.and.how.to.find.potential.sources.
of.financial.help.for.cancer.survivors .Under.
“Resources”.>.“Essential.Care”.tabs,.numerous.
links.and.contact.information.for.resources.on.
employment.rights.and.insurance/financial.
assistance .Under.“Cancer.Survivor.Toolbox”.tab,.
access.to.skill-building.module.for.helping.
underinsured.and.uninsured.cancer.patients.pay.
for.care
www canceradvocacy org
National.
Children’s.
Cancer.
Society
Under.“How.We.Can.Help”.>.“Cancer.Resources”.
tabs,.extensive.list.of.links.to.obtain.information.
about.(1).health.insurance.and.its.legal.aspects;.
(2).college.scholarships.and.more .Under.
“Program.Services”.tab,.information.and.on-line.
application.for.direct.financial.assistance.from.
the.National.Children’s.Cancer.Society.for.paying.
insurance.premiums.and.for.aspects.of.medical.
care
www nationalchildrenscan- cersociety com
table 31.4 (continued)
table 31.5 Resources.for.information.on.wellness.and.disease.prevention
Website
name Website sponsor
(if different) Summary of information or services provided Website address 2bMe.–.A.Site.
for.Teens.with.
Cancer
CTFA.Foundation and.American.
Cancer.Sosiety
Colorful,.upbeat.website.that.promotes.
personal.empowerment.by.providing.practical.
information.on.skin.care,.nutrition,.activity,.and.
dealing.with.hair.loss.(with.links.to.finding.head- gear.that.suits.one’s.style)
www 2bme org Website
name Website sponsor
(if different) Summary of information or services provided Website address Outlook-Life.
Beyond.
Cancer
University .of.
Wisconsin.
Children’s.
Hospital
(1).Information.on.how.to.choose.a.health.
insurance.plan.and.prepare.for.coverage.and.
employment;.(2).Information.and.links.to.federal,.
state,.and.community.resources.that.can.provide.
insurance.coverage.or.financial.assistance;.(3).
Discusses.how.prior.treatment.may.affect.job.
performance,.how.to.confront.medical.history.at.
work,.and.survivor.rights.at.work
www outlook-life org
Patient.
Advocate.
Foundation
Active.assistance.on.behalf.of.patients.to.resolve.
insurance,.job.retention,.and/or.debt.crisis.
matters
www patientadvocate org
Patient- Centered.
Guides
O’Reilly.and.
Associates Extensive.website.with.wealth.of.information.for.
survivors .Site.includes.excerpts.from.books.and.
articles.concerning.job-.and.insurance-related.
issues
www patientcenters com/
survivors
Pediatric.
Oncology.
Resource.
Center
Association.of.
cancer.online.
Resources
Extensive.list.of.college.scholarships.available.to.
cancer.survivors www acor org/ped-onc/
scholarships/
Surviving.and.
Moving.
Forward
The.SAMFund The.SAMFund.is.an.organization.dedicated.to.
providing.grants.and.scholarships.to.young.
adult.survivors.of.cancer.as.a.way.to.assist.in.the.
financial.transition.off.treatment.into.the.“real.
world ”
www thesamfund org
Ulman.Cancer.
Fund.for.
Young.Adults
Under.“Scholarship.Info”.tab,.information.on.
college.scholarships.available.for.qualified.
students.living.with.cancer
www ulmanfund org table 31.4 (continued)
Website
name Website sponsor
(if different) Summary of information or services provided Website address American.
Cancer.
Society
Under.“Health.Information.Seekers”.>.“Preven- tion.and.Early.Detection”.tabs,.recommenda- tions.for.maintaining.personal.health.after.
treatment,.including.nutritional.and.physical.
activity,.cancer.prevention.and.early.detection . Under.“Survivors”.>.“Support.for.Survivors.and.
Patients”.>.“Support.Programs.and.Services”.
tabs,.a.list.of.several.American-Cancer-Society- sponsored.programs,.including.a.nutritional.and.
activity.improvement.program.for.teens,.
employee.wellness,.smoking.cessation,.and.
various.cancer.screening.programs
www cancer org
American.
Institute.for.
Cancer.
Research
Nutritional.and.exercise.guidelines.for.survivors www aicr org/survivor
Canadian.
Cancer.
Society
Contact.information.for.Smoker’s.Helpline.
available.in.each.province.for.all.smokers,.
whether.or.not.they.are.ready.to.quit .Informa- tion.concerning.genetic.cancer.risks,.cancer- specific.screening.recommendations,.environ- mental.contaminants,.and.staying.well.through.
good.nutrition.and.physical.activity
www cancer ca
Cancer.
Council.
Australia
Under.“Cancer.Prevention”.tab,.information.
about.smoking.cessation.and.prevention.of.
various.cancers;.includes.links.to.Australian.
prevention.and.screening.programs .Under.“Sun.
Protection.Products”.tab,.information.about.
Council-endorsed.sun.protection.products.and.
where.to.obtain.them
www cancer org au
CancerBACUP Extensive.website.for.patients.in.the.United.
Kingdom.and.mainland.Europe .Under.
“Resources.and.Support”.tab,.detailed.and.
practical.discussion.of.diet.for.cancer.patients,.
including.special.dietary.considerations.for.
those.who.have.had.stomach.surgery
www cancerbacup org uk
CancerHelp.
UK Cancer.Research.
UK Under.“Worried.About.Cancer?”.tab,.thorough.
discussion.of.cancer.screening.and.prevention . Under.“Healthy.Eating”.tab,.detailed,.sensible.
information.on.nutrition.and.cooking.for.cancer.
patients
www cancerhelp org uk
Cancernet
co uk Site.in.the.United.Kingdom.offering.general.and.
contact.information.on.smoking.cessation . Detailed.information.on.dietary.and.exercise.
issues
www cancernet co uk
familydoctor
org American.Aca-
demy.of.Family.
Physicians
Prevention.and.wellness.information.under.the.
headings.of.healthy.living,.men’s.and.women’s.
health,.health.tools.and.more
familydoctor org table 31.5 (continued)
Website
name Website sponsor
(if different) Summary of information or services provided Website address Livestrong Lance.Armstrong.
Foundation Under.“Survivorship.Tools”.tab,.provides.
templates.for.keeping.track.of.medical.treat- ment,.creating.a.health.journal,.and.organizing.
important,.practical.information
Under.“Physical.Topics”.tab,.healthy.behaviors.to.
recover.and.maintain.health.are.discussed.in.
detail.with.additional.resources.provided
www livestrong org
National.
Children’s.
Cancer.
Society
Under.“How.We.Can.Help”.>.“Cancer.Resources”.
tabs,.extensive.list.of.links.including.several.for.
smoking.cessation.information.and.programs
www nationalchildrenscan- cersociety com
National.
Coalition.of.
Cancer.
Survivorship
Under.“Essential.Care”.tab,.extensive.information.
on.nutrition.and.exercise .Under.“Resources”.>.
“Essential.Care”.tabs,.links.for.additional.informa- tion.and.help.concerning.wellness,.quality.of.
life,.sleep.issues,.fertility.and.sexuality,.exercise.
and.more
www canceradvocacy org
Office.of.
Cancer.
Survivorship
National.Cancer.
Institute Links.to.federal.guidelines.and.related.informa-
tion.for.nutrition.and.cancer.screening dccps nci nih gov/ocs/
resources html
Outlook-Life.
Beyond.
Cancer
University.of.
Wisconsin.
Children’s.
Hospital
Under.“Health.Issues.and.Concerns”.tab,.
Wellness.Management.offers.description.of.the.
philosophy.and.benefits.of.several.health.
practices.for.prevention.and.early.detection.of.
adult.cancers
www outlook-life org
Patient- Centered.
Guides
O’Reilly.and.
Associates Extensive.website.with.wealth.of.information.for.
survivors .Site.includes.links.to.excerpts.from.
books.and.articles.dealing.with.emotional.and.
psychological.challenges,.achieving.successful.
transition.to.adulthood.and.adult-oriented.care,.
the.meaning.of.surviving.life-threatening.illness,.
and.related.topics
www patientcenters/
survivors
Ulman.Cancer.
Fund.for.
Young.Adults
Under.“Prevention.Tips”.tab,.pointers.for.
preventing.and.recognizing.cancer.of.the.skin,.
breast,.testicle,.and.colon
www ulmanfund org
WebMD Extensive.website.providing.wealth.of.general.
health.information.useful.to.survivors .Under.
“Condition.Centers”.tab,.in-depth.discussions.of.
diseases,.conditions.and.health.topics,.including.
diet.and.nutrition,.fitness.and.exercise,.mental.
health,.infertility,.men’s.and.women’s.health.
issues,.sexuality.,.and.much.more
www webmd com table 31.5 (continued)
table 31.6 Resources.for.psychosocial.issues.and.survivor.advocacy
Website
name Website sponsor
(if different) Summary of information or services provided Website address Canadian.
Cancer.
Society
On-line.directory.of.over.4,000.cancer-related.
services.throughout.Canada .Opportunities.for.
donating.and.getting.involved.in.advocacy.
efforts .Information.for.those.wishing.to.donate.
hair.for.wigs
www cancer ca
Cancer.
Survivors.On.
Line
Under.“Resources”.tab,.references.and.links.for.
information.on.personal.relationships,.including.
communication.and.sexuality.for.the.survivor
www cancersurvivors org
CancerBACUP Extensive.website.for.patients.in.the.United.
Kingdom.and.mainland.Europe .Under.
“Resources.and.Support”.tab,.extensive.index.of.
information.about.CancerBACUP.services.and.
centers.and.other.support.organizations;.
detailed.discussions.of.coping.with.emotional.
effects.and.sexuality .Under.“Get.Involved”.tab,.
multiple.opportunities.for.international.events.
and.adventures.to.raise.funds.and.awareness
www cancerbacup org uk
CancerHelp.
UK Cancer.Research.
UK Under.“Help.and.Support”.tab,.extensive.list.of.
links.and.other.contact.information.for.general.
and.cancer-specific.support.organizations.in.the.
United.Kingdom
www cancerhelp org uk
CanTeen The.Australian.
Organization.for.
Young.People.
Living.with.
Cancer
CanTeen.is.an.Australian.national.organization.
providing.support.for.adolescents.and.young.
adults.living.with.cancer .Member.participation.is.
encouraged.in.camps,.other.outings,.and.
educational.meetings
www canteen org au
Candlelight-
ers Childhood.
Cancer.Founda- tion.Canada
Under.“Programs”.tab,.information.on.Candle- lighters.Teens,.a.Canada-wide.network.to.
support,.develop.and.empower.teens.with.
cancer .Contact.information.provided.by.
province
www candlelighters ca
Children’s.
Cause Under.“Policy”.>.“Quality.Cancer.Care.and.
Survivorship”.tabs,.information.about.policies,.
issues,.Congressional.news,.and.advocacy.
resources.related.to.ensuring.quality.of.care
www childrenscause org
CureSearch Children’s.Onco- logy.Group.and.
National.Child- hood.Cancer.
Foundation
Ideas.and.opportunities.for.assisting.both.
individuals.and.organizations.in.the.fight.against.
childhood.cancer .Links.to.legislative.contacts.
provided
www curesearch org
Gilda’s.Club.
Worldwide Gilda’s.Club.provides.friendly,.supportive.
meeting.places.to.help.build.emotional.and.
social.support.for.people.living.with.cancer . Website.provides.contact.information.for.Gilda’s.
Club.homes.and.links.to.other.resources ...
www gildasclub org
Website
name Website sponsor
(if different) Summary of information or services provided Website address Group.Loop Wellness.
Community A.safe,.on-line.community.for.teens.dealing.with.
cancer .Includes.on-line.discussion.boards,.
support.groups.and.other.empowering.informa- tion.written.specifically.for.teens.to.help.them.
cope
www grouploop org
Livestrong Lance.Armstrong.
Foundation Under.“Emotional.Topics”.tab,.addresses.
numerous.related.issues.including.communica- tion,.dating.and.new.relationships,.finding.mean- ing,.living.with.uncertainty,.sadness,.setting.
priorities,.and.more
www livestrong org
Macmillan.
cancer relief Organization.in.the.United.Kingdom.offering.
contact.information.for.Macmillan.Cancer.
Information.and.Support.Centers,.and.an.on-line.
directory.of.other.support.and.self-help.organi- zations.throughout.the.United.Kingdom . Opportunities.for.cancer.advocacy
www cancerlink org
Outlook-Life.
Beyond.
Cancer
University.of.
Wisconsin.
Children’s.
Hospital
Under.“Health.Issues.and.Concerns”.tab,.
Emotional.Well-Being.discusses.potential.
emotional.side.effects.of.life-threatening.illness.
and.how.to.build.stronger.emotional.and.
physical.health
www outlook-life org
Patient- Centered.
Guides
O’Reilly.and.
Associates Extensive.website.with.wealth.of.information.for.
survivors .Site.includes.links.to.excerpts.from.
books.and.articles.dealing.with.emotional.and.
psychological.challenges,.achieving.successful.
transition.to.adulthood.and.adult-oriented.care,.
the.meaning.of.surviving.life-threatening.illness,.
and.related.topics
www patientcenters com
People.Living.
With.Cancer American.Society.
of.Clinical.
Oncology
Under.“Coping”.tab,.information.about.dealing.
with.emotional.aspects.of.cancer,.mental.health,.
relationships,.support.groups,.and.sexuality . Also.includes.expanding.section.on.Cancer.in.
Teenagers.and.Young.Adults,.with.links.to.several.
sites
www plwc org
Planet.Cancer Planet.Cancer.is.dedicated.to.supporting.young.
adults.with.cancer .The.website.is.a.colorful,.hip.
source.of.humor,.support,.and.some.medical.
information;.serves.as.a.networking.forum.for.
patients
www planetcancer org
Pregnant.With.
Cancer.
Network
Support.network.connecting.persons.who.have.
experienced.the.diagnosis.of.cancer.while.
pregnant .Some.links.and.other.information.
available
www pregnantwithcancer org
table 31.6 (continued)
acknowledgments
Valuable assistance in assessing websites was provided by research nurses of the Cook Research Department at DeVos Children’s Hospital, Michigan, USA.
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cancer.patients.and.families
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