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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
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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-
Clinical Journal of Oncology Nursing Volume 17, Number 5 Web Sites About Cancer-Related Lymphedema
533
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
Redundancy
47
46
41
41
Professional association
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
www.lfh.org
u Service
dOncologie Mdicale et de
Thrapie Cellulairea
www.somht.com/lymphoedeme.html
u Tennessee
Oncology
www.tnoncology.com
u Unity
Sciences
www.uamshealth.com
Web sites selected using French search terms and French search engines
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).
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.
Clinical Journal of Oncology Nursing Volume 17, Number 5 Web Sites About Cancer-Related Lymphedema
535
n
12
3
2
1
1
14
4
3
1
7
6
2
2
1
15
4
Discussion
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
No
n
15
20
85
75
21
55
32
42
44
100
44
100
35
61
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.
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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