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n Article

Information for Patients With or at Risk


of Cancer-Related Lymphedema:
An Evaluation of Web Sites
Sylvie Dubois, RN, PhD, and Nathalie Folch, PhD

The Internet has great potential to provide information to patients with or at risk of developing
cancer-related lymphedema (CRL), a complication of cancer treatment. To evaluate Web site
structure (e.g., accreditation, design) and content (e.g., validity) for available Web sites on CRL,
lymphedema, lymphoedema, cancer, and oncology were used with 10 search engines (five French
and five English). The first page of each Web site was examined and the content was identified
and classified using the evaluation model of the Science Panel on Interactive Communication
and Health. The search strategy yielded 120 Web sites. Using inclusion and exclusion criteria, 19
Web sites were selected. The authors found that 79% of the Web sites focused exclusively on
iStockphoto/Thinkstock
CRL and 74% were in English. Although information about each sites sponsor, goal, and target
audience was readily available, content material was incomplete and evaluation of Web site impact and effectiveness was
nonexistent. This review suggests that Web sites about CRL vary greatly in terms of structure and content.
Sylvie Dubois, RN, PhD, is the director of nursing at the Direction of Nursing and a professor in the Faculty of Nursing, and Nathalie Folch, PhD, is a research
consultant at the Direction of Nursing, both at the University of Montreal Hospital Center in Canada. The authors take full responsibility for the content of the
article. This work was supported in part by the Direction of Nursing at the University of Montreal Hospital Center, the University of Montreal, and an institutional
grant from the Social Sciences and Humanities Research Council of Canada. The authors did not receive honoraria for this work. The content of this article has
been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the
content of this article have been disclosed by the independent peer reviewers or editorial staff. Dubois can be reached at sylvie.dubois@umontreal.ca, with copy
to editor at CJONEditor@ons.org. (Submitted December 2012. Revision submitted February 2013. Accepted for publication March 24, 2013.)
Digital Object Identifier:10.1188/13.CJON.533-538

ancer survival rates are increasing every year (National Cancer Institute, 2011). However, this also
presents other challenges, including issues such
as an increase in reported cases of lymphedema, a
condition that may occur after surgical treatment,
radiation therapy, or both. Cancer-related lymphedema (CRL) is
a chronic condition that may contribute to impairment in range
of limb motion, loss of strength, and functional limitations with
activities, therefore decreasing quality of life (Medical Services
Advisory Committee, 2004; Shih et al., 2009). CRL also can
have significant economic consequences (Beaulac, McNair,
Scott, LaMorte, & Kavanah, 2002); for example, it represents
an average annual expense of $3,125 per patient (Stout et al.,
2012). The physiologic insufficiency of the lymph system leads
to the accumulation of fluid in the interstitial tissues, which can
happen immediately after treatment or even several months or
years later (International Society of Lymphology [ISL], 2003;
Lymphoedema Framework, 2006). Although the number of in-

dividuals suffering from CRL is not known, Rockson and Rivera


(2008) estimated that 23 million people in the United States
may be affected by CRL or primary lymphedema, a hereditary
or congenital problem (e.g., lymphatic system malformation).
Several studies have shown varying percentages of CRL
depending on the type of cancer (Armer, 2005; Cormier et al.,
2010; Crane-Okada & Loney, 2007). For breast cancer, the reported incidence is around 5%20% (Rockson & Rivera, 2008),
although the percent varies widely from 6%63% depending on
the study population, measurement scale, and length of followup (Armer, 2005, 2010). Based on a systematic review and metaanalysis, Cormier et al. (2010) showed that the overall incidence
of lymphedema in conditions other than breast cancer is 16%
and varies with site of malignancy (sarcoma, 30%; lower extremity, 28%; gynecologic, 20%; melanoma, 16%; genitourinary,
10%; upper extremity, 5%; and head and neck, 4%). In addition,
the risk for developing lymphedema increases for patients undergoing radiation therapy (31%) and pelvic dissections (22%).

Clinical Journal of Oncology Nursing Volume 17, Number 5 Web Sites About Cancer-Related Lymphedema

533

1. Information about the organization, Web site designer, and sponsor


2. Goal of the site and target audience
3. Content
4. Confidentiality
5. Interface
6. Evaluation of Web site impact and effectiveness
7. Whether Web site evaluation results are available (only available if
criterion 6 is fulfilled)
8. Accreditation of site sponsor

FIGURE 1. Criteria Used to Evaluate Web Sites

In studies with women diagnosed with breast cancer, participants may have been informed about the complications of
cancer treatment (such as CRL), however, they may not have
remembered. They also did not receive training on self-care at
the right time during their treatment, taking into account the
care trajectory or when the patients asked for it (Bosompra et
al., 2002; Greenslade & House, 2006; Krki, Simonen, Mlki, &
Selfe, 2004; Radina, Armer, Culbertson, & Dusold, 2004). Hibbart,
Stockard, Mahonay, and Tusler (2004) showed that an individuals
knowledge, skills, and confidence can significantly increase the
use of tools for self-care (e.g.,Web sites, training, support groups).
Studies show the importance of implementing a care routine that
includes precautions and specific exercises after a cancer treatment, and that this routine must be maintained throughout life
to prevent complications (e.g., CRL bruises, wound infection, loss
of shoulder mobility) (Harris, Hugi, Olivotto, & Levine, 2001; ISL,
2009; Lawenda, Mondry, & Johnstone, 2009; Mayrovitz, 2009;
National Lymphedema Network Medical Advisory Committee,
2012). The Lymphedema Association of Quebec (2010) also suggested the development of self-care practices to help patients
manage symptoms and maintain an active life.
The World Health Organization (2006) predicted that the number of individuals diagnosed with cancer and needing information
will increase by 50% in 2020. The effectiveness of traditional approaches to patient education, such as leaflets, books, and videos,
has been questioned, leading to the development of new educational strategies (Gysels & Higginson, 2007; Weston, Weston,
Carolina, Lepore, & Pinto, 2007; Wofford, Smith, & Miller, 2005).
Technologies, such as the Internet, offer a way for individuals
to obtain health information. However, the quality of this information varies greatly (Cyr, Mathieu, Dubois, & Loiselle, 2006;
Mohr, Cuijpers, & Lehman, 2011). Such modalities represent a
resource that is not necessarily controlled by a professional educational system, although individuals are increasingly turning to
these resources. Thousands of health information Web sites are
available; for example, in 2004, about 15,000 health information
Web sites existed (Saab et al., 2004). In Canada, 27 million people
(84% of the total population) use the Internet, and 48% of those
people use the Internet at least three times a day (Internet World
Stats, 2011). In addition, 70% of Canadians and 61% of Americans
used the Internet to obtain information on health issues in 2009
(Cohen & Adams, 2009; Statistique Canada, 2009).
Studies show that 39% of patients diagnosed with cancer in
developed countries consult the Internet; this represents 2.3
million patients in addition to the 15%20% who use it indirectly via friends and family (Eysenbach, 2003). Cancer is one
of the diseases for which people most actively seek information
534

on the Internet (Satterlund, McCaul, & Sandgren, 2003). The Canadian Cosmetic, Toiletry, and Fragrance Association (CCFTA)
Foundation (2011) published a report about 800 women living with cancer, which showed that 74% used the Internet to
find relevant information and practical advice. Of the women
surveyed, 86% looked at medical information and 49% looked
at information about living with cancer and practical advice.
Despite the wide variety of information available on CRL
and the importance of supporting patients in managing their
health condition, no analysis of the content (e.g.,validity)
and structure (e.g., accreditation, interface, design) of Web
sites about CRL has occurred to the authors knowledge. The
problem is not finding information, but rather assessing the
credibility of the sites creator as well as the relevance and
accuracy of the information contained in the Web site. Given
the increase in cancer survivorship, the prevalence of possible
postcancer complications like CRL, and increased patient use
of the Internet, evaluating the available Web sites about CRL
is crucial to aid patients with or at risk for developing CRL.
Therefore, the objectives of the present study are (a)to identify Web sites based on a Web search for CRL, (b) to estimate
the quality of these sites in terms of information (both on the
site and about the organization) and content, and (c) to make
recommendations that will improve the content and visibility
of Web sites about CRL, therefore optimizing their role in
educational support.

Methods
Identification of Web Sites
The first step was to identify Web sites that provided information on lymphedema. This approach was designed to mimic
the search patterns of most Internet users. Fallows (2005) has
shown that 44% of American Internet users say they regularly
use a single search engine, and 48% use two or three search engines. In addition, the majority of Internet users stop at the first
or second page of search results (Eysenbach & Khler, 2002).
The five most commonly used Web search engines in the United
States, Canada, and France are Google, Yahoo, MSN, Ask Jeeves,
and AOL (Sullivan, 2006). Therefore, the authors restricted the
review of Web sites only to those that appeared on the first page
using each of the five search engines. Support for this choice also

TABLE 1. Reasons for Excluding Web Sites (N = 101)


Reason

Redundancy

47

46

Media or scientific article

41

41

Commercial Web site

Social media (e.g., blog, patient forum,


Wikipedia page)

Web site with obligatory registration

Professional association

October 2013 Volume 17, Number 5 Clinical Journal of Oncology Nursing

u American

Cancer Society
www.cancer.org
u American Lymphedema Framework Project
www.alfp.org
u American Society of Clinical Oncology
www.cancer.net
u Association le Cancer du Sein Parlons-Ens
www.cancerdusein.orga
u Cancer Council Victoria
www.cancervic.org.au
u Cancer Treatment Centers of America
www.cancercenter.com
u Fondation Cancer du Sein du Qubeca
www.rubanrose.org
a

u Les

Impatientesa
www.lesimpatientes.com
u Lexington Medical Center
www.lexmed.com
u Lymphedema People
www.lymphedemapeople.com
u Lympho Qubeca
www.lymphoquebec.com
u Macmillan Cancer Support
www.macmillan.org.uk
u MedicineNet
www.medicinenet.com
u National Cancer Institute
www.cancer.gov

u Northwestern

Lake Forest Hospital

www.lfh.org
u Service

dOncologie Mdicale et de
Thrapie Cellulairea
www.somht.com/lymphoedeme.html
u Tennessee

Oncology
www.tnoncology.com
u Unity

Point HealthJohn Stoddard


Cancer Center
www.johnstoddardcancer.org
u University of Arkansas for Medical

Sciences
www.uamshealth.com

Web sites selected using French search terms and French search engines

FIGURE 2. English and French Web Sites Used in Evaluation

comes from a study that showed Internet users could find health
information to answer their questions in an average of 5 minutes
and 42 seconds, even when their search technique was often
suboptimal (Eysenbach & Khler, 2002). Standardized Internet
searches were conducted by entering lymphedema, lymphoedema, cancer, and oncology in each of the selected search
engines. Given the bilingual context in Canada, the authors also
entered the French terms lymphoedme, lymphoedme, cancer,
and oncologie. Then, researchers compiled a list of potential Web
sites for review based on the searches.
Because the goal was to find relevant information and practical
advice for the safe and optimal support of patients, any redundancy in sites was eliminated, and commercial and professional
Web sites, articles (media or scientific journals), Web sites with
obligatory registration, and social media (e.g., blogs, patient
forums, Wikipedia pages) were excluded. The Science Panel on
Interactive Communication and Health ([SciPICH], 1999) evaluation model was used, with data extraction conducted by the
second author and discussed with the first author.
Each Web site retained for the analysis was reviewed for information by a doctorate-level nurse specialist in oncology and
a doctorate-level health researcher to estimate the quality of
the site in terms of information and content. The IP addresses
of these sites were entered in a table, identified with a number,
and separated into three categories based on language: French
only, English only, and French and English. Using the evaluation model of the SciPICH adapted by Cyr et al. (2006) for the
Canadian context, each Web site was evaluated based on eight
criteria (see Figure 1).

Accreditation of Site Sponsor


For each criterion, the specialist in oncology and the health
researcher entered yes or no to indicate presence or absence
of the criterion. The SciPICH model has the advantage of proposing useful and simple beacons. Stemming from a scientific
roundtable on interactive communications in health (SciPICH,
1999), these relevant criteria are presented in a format that allows
for fast and effective evaluation of Web sites. This model aims to
guide patients by helping them develop a critical faculty with
regard to health information they find on the Internet. The results

are presented as total number and percentage of sites meeting


each of the eight criterion.

Results
The searches yielded a total of 120 Web sites. After screening
the Web sites found on the first results page of each search, 101
sites were excluded. Table 1 provides details on the reasons for
exclusion.

Characteristics of Web Sites


The 19 Web sites identified as relevant are presented in Figure
2. Of the 19 Web sites, 74% were in English only, and 26% were
in French or in both English and French (see Table 2). One was
bilingual, but did not come up when using an English search
term. Some (63%) of the Web sites were American and 16% were
European. Relative to type of lymphedema, 79% of the Web sites
dealt exclusively with CRL, compared to 21% that discussed
lymphedema in general (primary or secondary lymphedema).
In total, 37% of the Web sites were developed by a foundation or
non-profit organization, and 32% by a hospital. About 11% were
Web sites created by a government organization.

Web Site Evaluation


Fewer than half (45%) of the sites evaluated met six of the
eight criteria of the SciPICH evaluation model (see Table 3). A
large majority of Web sites (95%) indicated their objective and
target audience (criterion 2). In addition, almost all sites (80%)
specified the identity of the sponsoring organization and site
creator (criterion 1). The authors of the content were generally
medical experts, and it was possible to communicate with the
authors of the site. On the other hand, 75% of Web sites did not
offer comprehensive content based on original sources, along
with updates, Web site upgrades, and evidence-based validation
(criterion 3). In addition, 61% of the sites did not give the name
of the sponsor or information on its accreditation, including date
of accreditation (criterion 8).
Fifty-five percent of the Web sites did not offer a sufficient
level of confidentiality (criterion 4) (e.g., anonymity, protection

Clinical Journal of Oncology Nursing Volume 17, Number 5 Web Sites About Cancer-Related Lymphedema

535

TABLE 2. Characteristics of Web Sites Reviewed (N = 19)


Characteristic
Country
United States
Canada
France
United Kingdom
Australia
Language
English
French
English and other languages
Bilingual (French and English)
Site creator (N = 18)
Foundation or nonprofit organization
Hospital
Government organization
Patient forum or blog
University
Lymphedema
Cancer-related lymphedema (CRL) only
Lymphedema (primary and CRL)

n
12
3
2
1
1
14
4
3
1
7
6
2
2
1
15
4

of user personal information). On the other hand, 58% of Web


sites offered a good interface (criterion 5), including easy navigation, language at an appropriate reading level, and high-quality
graphics and soundtracks.
Criteria 6 and 7 were not met by any of the Web sites. One of
these criteria (criterion 6) concerned the evaluation of the Web
sites effectiveness as reflected in visitor satisfaction or changes
in user knowledge or health behavior. Note that criterion 7
could only be assessed if criterion 6 had been met.

Discussion

have reliable information on the organization behind the Web


site and on the Web sites purpose and objectives, as well as
a simple, easy, and user-friendly interface. However, they are
less reliable when it comes to identifying a privacy policy and
providing information on accreditation. In a study by Eysenbach
and Khler (2002), the participants tended to judge the credibility of a Web site based on the Web sites source and design
and how user-friendly it was. However, they did not consult
the About Us section of the Web sites, try to determine the
site author or owner, or report on any disclaimers or disclosure
statements.
In the current study, almost 32% of the Web sites analyzed
(N = 19) were created by a hospital, suggesting that these
Web sites about CRL have medical or scientific supervision. A
second analysis shows active participation by one or several
healthcare professionals (e.g., physician, nurse, psychologist) in
the content of about 80% of sites. This confirms the results of
Eysenbach and Khler (2002), which showed that users place
importance on the use of scientific terms in the Web site.
Criterion 3, relating to Web site content, was not met in 75%
of cases, despite the majority of sites having scientific supervision. Therefore, sub-criteria were analyzed in an attempt to
understand why. The authors concluded that the main problems
related to citing original sources, updating content, and demonstrating validity (evidence-based). However, the Web sites
often did meet the sub-criteria related to content reliability and
relevance for the target public.

Implications for Practice


Credible information and updated content is crucial for patients, nurses, and organizations that create health information
Web sites (e.g., hospitals, non-profit organizations, government
organizations). Web sites that adhere to this principle will
distinguish themselves while providing useful and relevant
information to patients and the healthcare professionals
that accompany them. Research shows that some healthcare
professionals wish to identify patients at risk for developing

Ekman, Hall, and Litton (2005) compared interactive cancer risk sites and determined that the quality of information
available to patients with cancer is
highly variable. The current study
corroborates these findings, specifiTABLE 3. Evaluation Criteria: Results for Web Sites Reviewed (N = 19)
cally for CRL. Forty-five percent of
the reviewed Web sites about CRL
Yes
met six of the eight criteria evaluatCriterion
n
%
ed. Even after removing the results
for criteria 6 and 7, this percentage
Information about the organization, Web site creator, and sponsor
61
80
only increased to 54%. The results
Goal of site and target audience
54
95
remained unchanged if the authors
separated French and English Web
Content
29
25
sites. No Web site, or organization
Confidentiality
17
45
in charge of a Web site, estimated
its effectiveness or its impact on
Interface
44
58
users, their knowledge, behavior,
Evaluation of Web site impact and effectiveness

health, or use of resources. Although these evaluations may have


Are evaluation results available?

been carried out, the results were


Accreditation of site sponsor
22
39
not made available.
The current studys results show
Note. Because each criterion included several questions, n does not equal 19.
that Web sites about CRL generally
536

No
n

15

20

85

75

21

55

32

42

44

100

44

100

35

61

October 2013 Volume 17, Number 5 Clinical Journal of Oncology Nursing

lymphedema and refer them for preventive measures (Walker


et al., 2011); the Internet could be a suitable support for them
and their patients.
When designing a Web site, an organization should cite the
original sources used and regularly update or review the content.
Evaluating the effectiveness or impact of the site on users and
making the evaluation results available also are important. Another form of quality control would be to subscribe to the Code
of Conduct of the Health-on-the-Net (HON) Foundation. The
goal of this code is to help standardize the reliability of medical
and health information available on the Web (HON Foundation,
2011). It includes eight principles: authority (statement of the
authors qualifications), complementarity (statement that the
Web site is an informational support and does not replace the
doctor-patient relationship), confidentiality (respect for the privacy and confidentiality of personal data submitted to the site
by the visitor), attribution (citation of the sources of published
information; dating of medical and health pages), justifiability
(claims relating to benefits and performance are backed up),
transparency (accessible presentation and accurate e-mail contact), financial disclosure (identification of funding sources), and
advertising (clear distinction between advertising and editorial
content) (HON Foundation, 2011). Comparison of the HON code
certification with the model used in the current study shows that
the SciPICH model adapted to the Canadian context contains
similar criteria and can, therefore, be considered adequate for
evaluating health Web sites.

Limitations
One of the limitations of this study is that the authors did not
specify the type of cancer in the Web search. Doing so would
refine the search and possibly lead to other Web sites that provide patients with more specific and precise information on
lymphedema. Healthcare professionals and patients should be
involved in the future evaluation of Web sites. In addition, the
study should be repeated in two years to determine whether
new sites have appeared and whether quality (structure and
content) has changed for the Web sites examined in this study.
Healthcare providers should screen Web sites and recommend
those that meet specific criteria. Out-of-state and non-scientific
information may not reflect the latest research findings or treatments and could be harmful for patients.

Conclusions
To the authors knowledge, this Web site review is the first to
specifically evaluate the Web site structure and content about
CRL. The authors evaluation particularly is important given that
lymphedema is a significant complication of cancer and can arise
anywhere from shortly after treatment to several months, even
years, later. Patients and healthcare professionals will know how
to evaluate the available Web sites. In addition, organizations
(e.g., hospitals, foundations, nonprofit organizations, government
organizations) that have developed a Web site for patients with,
or at risk for developing, CRL can use these results to improve
their site.
This study suggests that Web sites about CRL, which mostly
are in English only, vary widely in terms of structure and content.

Implications for Practice


u

Healthcare professionals should identify health information


Web sites related to the patient situation.

Assessing Web sites using the Science Panel on Interactive


Communication and Health on the Net Foundation models
can help provide quality, accurate, and updated health
information.

Healthcare professionals should offer additional informational support to patients with cancer that can be accessed
at any time.

The analysis shows that information about the Web sites creator,
goals, and target audience are readily available; however, information about content is incomplete, and information on the evaluation of the Web sites impact and effectiveness is nonexistent.

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October 2013 Volume 17, Number 5 Clinical Journal of Oncology Nursing

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