Keywords
uterine fibroids - quality of information - DISCERN questionnaire - internet
Palavras-chave
miomas uterinos - qualidade da informação - questionário DISCERN - internet
Introduction
Uterine fibroids (UFs) are the most common benign gynecological pathology, and out
of the 70 to 80% of women who present these tumors, 20 to 30% will have symptoms related
to their presence, such as abnormal uterine bleeding and pelvic pain.[1] These complaints significantly impair their quality of life,[2] and UFs are the main reason for benign hysterectomy in the United States.[3] Despite the advance of non-surgical treatment for UFs, we still do not have a non-invasive
option with no side effects that may enable the avoidance hysterectomy and/or myomectomy
in all cases.
Furthermore, one of the motivations for women to undergo surgery is the lack of knowledge
regarding the disease.[4] The Internet is an option for seeking information, and the number of users has considerably
increased year after year; however, the quality of the medical information available
for lay women is extremely variable.[5] The number of websites presenting topics directly and/or indirectly related (with
mention, for example) to UFs has risen from 5,680 to 70,600 since 2004, and the absolute
number of searches has increased. However, the mean activity of global search for
UF has reduced, which may represent a higher availability of material regarding the
disease, or websites with low quality of information.[6]
To our knowledge, there are scant data regarding the quality of the information available
about UF. There are tools available to assess the quality of health-related information,
such as the DISCERN instrument,[7] which has been extensively used in the medical literature to assess these points.
Moreover, the accuracy of the content is another issue that should be assessed while
reading these materials. Given that, we have aimed to evaluate the quality of the
information regarding UF on the Internet by searching patient-focused, professional,
governmental and consumer websites.
Methods
Study Design, Identification of the Websites
The present review was registered at the PROSPERO database (CRD42015017139). The study
protocol was presented to our Institutional Review Board, which authorized the study.
A list of terms derived from uterine fibroids (uterine leiomyoma, fibroids, myoma,
for example) in the English and Brazilian Portuguese languages were investigated on
several search engines (Google, Bing, Yahoo). Websites that were not available for
patient information or with scientific studies with no plain summary were excluded.
We have also actively sought for patient-information websites contained within the
most important scientific associations related to gynecology (such as the American
Society for Reproductive Medicine [ASRM] and the European Society of Human Reproduction
and Embryology [ESHRE]), or websites belonging to the federal government (such as
those of the National Institutes of Health [NIH] and the Food and Drug Administration
[FDA]) in both languages. Two independent investigators (Melo DG, first-year resident
of obstetrics and gynecology, and Jallad PSS, a medical intern), performed this search
with no discussion between them. A third investigator, Brito LGO, an experienced physician,
double-checked the first 30 scores from both languages to see if there was any disagreement.
Instruments
The assessment of the accuracy of the content consisted of a compilation of all definition,
diagnosis, and treatment consensuses of the ASRM, the NIH, and the European Menopause
and Andropause Society (EMAS).[8]
[9] Each item received a score (0–incorrectly mentioned or not mentioned; 1–partially
or totally/correctly mentioned), with a possible range between 0 and 10, which is
displayed in [Table 1].
Table 1
Accuracy criteria for the information regarding uterine fibroids found in websites
|
Item
|
Description
|
|
1
|
Definition – a gynecological benign tumor, with low risk potential for cancer, affecting
20–30% of women, with symptoms such as abnormal bleeding and pelvic pain
|
|
2
|
Risk factors – African American women, family history, obesity, hypertension
|
|
3
|
Clinical evaluation – anamnesis + physical exam findings, other symptoms, other aspects
(e.g., fibroids and infertility)
|
|
4
|
Imaging evaluation – ultrasound and magnetic resonance imaging
|
|
5
|
Treatment options – expectant, clinical, minimally invasive, and surgical
|
|
6
|
Clinical treatment (hormonal) – progestogens, combined contraceptives, GnRH analogues,
SPRMs
|
|
7
|
Clinical treatment (non-hormonal) – NSAIDs, antifibrinolytics
|
|
8
|
Minimally invasive treatment – uterine artery embolization, high intensity focused
ultrasound
|
|
9
|
Surgical treatment – indications, myomectomy, hysterectomy
|
|
10
|
Decision-making process, morcellation and risk of incidental leiomyosarcoma
|
Abbreviations: GnRH, gonadotropin-releasing hormone; NSAID, non-steroidal anti-inflammatory
drug; SPRM selective progesterone receptor modulator.
The quality of the information was analyzed through the DISCERN instrument, which
is a 16-item questionnaire, with each question scored using an ordinal Likert scale
(scores: 1–5), in which 5 indicates the highest quality. The individual scores are
added, for a maximum attainable score of 80, and the highest scores are associated
with higher quality and reliable information.[7] We have also categorized the score results from the DISCERN questions into low (1),
moderate (2–3), and high (4–5).
Statistical Analysis
Data were collected using the Microsoft Excel 2013 (Microsoft Corporation, Redmond,
WA, US) and exported to the Stata Statistical Software: Release13 (StataCorp LLC,
College Station, TX, US) for statistical analysis. A descriptive analysis of each
variable (median or mean, standard deviation [SD] or range, and interquartile values)
was made. A Cohen kappa analysis was conducted, in which the two reviewers graded
the scores in the DISCERN instrument and in the accuracy criteria. The intraclass
coefficient and the item–test correlation were calculated for all 16 questions of
the DISCERN instrument and of the accuracy criteria; a value lower than 0.60 indicated
a low concordance; a score between 0.60 and 0.80 indicated a moderate concordance;
and a score > 0.80 indicated a higher concordance. A linear regression was performed
to compare the DISCERN instrument and the accuracy criteria. Analysis of variance
(ANOVA) was used to compare any differences between the accuracy criteria or the DISCERN
instrument among the search engines. The significance level was established at 5%.
Results
After entering all of the search terms into the search engines, the results were retrieved
within a range between 2 and 3.550.000 websites. We decided to search the first 200
results of each search engine. After excluding duplicates, of the 426 websites that
were retrieved during the search, 380 were analyzed by both researchers.
[Table 2] displays the main findings. Most of the pages did not have the year of publication.
Google was the most used search engine, and uterine fibroids was the search term that generated most of the analyzed material. The ANOVA analysis
showed a statistical difference regarding the search term and the DISCERN total score
(p = 0.04), and no difference according to the accuracy criteria (p = 0.56). The most prevalent suffixes were .com (66.58%), and .org (18.42%), with no differences between them and the DISCERN questionnaire (p = 0.93). No statistical differences were observed regarding the search engine and
the accuracy results (p = 0.31), but there were differences between them and the DISCERN instrument (p < 0.001).
Abbreviation: IQR, interquartile range.
The top-scoring sites in the English language were from scientific organizations and
federal government agencies, and they regarded the DISCERN score (ACOG, ESHRE, and
FDA) and the accuracy criteria (NIH, and FDA). The ASRM presented accuracy and DISCERN
scores of 8 and 67 respectively. Moreover, we have found websites by general practitioners
(American Academy of Family Physicians [AAFP]) explaining fibroids, with accuracy
and DISCERN scores of, 7 and 64 respectively. On the other hand, in the Brazilian
Portuguese language, the highest scores in both instruments were found in magazines
or in physician's blogs ([Table 2]).
The median score for accuracy in all websites was 5 out of 10, and the median score
of the DISCERN instrument was 38 out of 80. The linear regression showed a positive
correlation between the accuracy criteria and the DISCERN instrument (exponent coefficient = 2.17
[1.54–3.04]; p < 0.001). The Cohen kappa results between the investigators regarding the accuracy
and DISCERN analyses were, respectively, 0.78 and 0.72, showing a moderate agreement.
[Fig. 1] shows the distribution of the DISCERN answers by category; a broader, distributed
number of low scores is perceived throughout the graphic, different from moderate
and high scores, which suggests that a higher number of low scores were found.
Fig. 1 Distribution of DISCERN scores (low, moderate, high).
[Table 3] displays the intraclass coefficient and the item–test correlation for all the DISCERN
questions. The Cronbach α test showed a narrow range (0.77–0.79) between them, indicating
a good to excellent correlation. However, the item–test correlation varied between
0.39 and 0.56, and, interestingly, question 16 (which represents the overall rating
score of the publication) showed the lowest value, indicating a mild agreement with
the rest. The mean DISCERN score for question 16 was 2.58, that is, most of the websites
fulfilled between 50 and 60% of the DISCERN scores.
Table 3
Descriptive results, item–test correlation and intraclass coefficient of the DISCERN
instrument for uterine fibroids (n = 380)
|
Questions* (Likert score: 1–5)
|
Total DISCERN score – Mean (SD)
|
Item-test correlation
|
Intraclass coefficient
|
|
1. Is it clear what the website is about, or that it meant to cover uterine fibroids?
|
3.61 ± 0.89
|
0.47
|
0.78
|
|
2. Does the website achieve its aims of discussing the definition, diagnosis and
treatment of uterine fibroids?
|
3.10 ± 1.07
|
0.53
|
0.78
|
|
3. Does the website address the questions women might ask? Does it suggest viable
treatment options?
|
2.85 ± 1.22
|
0.57
|
0.77
|
|
4. Does the website mention its sources of information? Does it refer to where the
reader may obtain information about what is written?
|
2.06 ± 1.29
|
0.48
|
0.78
|
|
5. Is it clear when the document/its sources were produced describing the treatment
options for uterine fibroids?
|
1.42 ± 1.03
|
0.53
|
0.78
|
|
6. Is the publication balanced/unbiased in presenting all of the treatment options
for uterine fibroids?
|
2.91 ± 0.95
|
0.42
|
0.79
|
|
7. Does it provide details of additional sources of support and information?
|
1.81 ± 0.94
|
0.52
|
0.78
|
|
8. Does the website provide any gaps of knowledge or differences in expert opinion
concerning the treatment choices for uterine fibroids?
|
2.11 ± 0.91
|
0.50
|
0.78
|
|
9. Does it describe how each treatment works?
|
2.7 ± 1.40
|
0.53
|
0.78
|
|
10. Does it describe the benefits of each treatment?
|
2.52 ± 1.15
|
0.56
|
0.77
|
|
11. Does it describe the risks of each treatment?
|
2.19 ± 1.05
|
0.61
|
0.77
|
|
12. Does it describe what would happen if no treatment is chosen?
|
1.51 ± 0.97
|
0.61
|
0.77
|
|
13. Does it describe how the treatment choices affect the overall quality of life
of women with uterine fibroids (e.g., side effects, duration of treatment)?
|
2.63 ± 1.35
|
0.43
|
0.78
|
|
14. Is it clear that there may be more than one possible treatment choice?
|
3.14 ± 1.60
|
0.40
|
0.79
|
|
15. Does the website give suggestions for shared decision-making (with family, friends
and health professionals)?
|
1.92 ± 1.18
|
0.48
|
0.78
|
|
16. What is the overall quality of the publication as a source of information about
treatment choices?
|
2.58 ± 1.35
|
0.39
|
0.79
|
Abbreviation: SD, standard deviation.
Note: *Section 1 (Is the publication reliable?): questions 1–8; Section 2 (How good
is the quality of information on treatment choices?): questions 9–15; Section 3 (Whart
is the overall rating of the publication?): question 16.
Discussion
In summary, we have found that websites with patient-health information about uterine
fibroids presented an approximate score between 40 and 50% after being assessed by
a quality information instrument (DISCERN), and 50% of accuracy of the provided information.
However, the ACOG, and FDA websites presented higher DISCERN and accuracy scores,
and it seems that, in the English language, scientific organizations and federal government
agencies are aiming to communicate in a way that enables lay women to understand this
disease. This involvement is essential to the credibility and proximity of these institutions
with our patients. Recently, the FDA did not recommend electromechanical morcellation
during laparoscopic hysterectomy due to the risk of incidental leiomyosarcoma, and
this raised the number of searches about the topic on the Internet for some time.[10] Information should be evidence-based, understandable by patients, and free of any
bias. Conversely, the Brazilian Portuguese sites that achieved the highest scores
were those of magazines or of physicians bloggers. It is important that medical societies
be involved in the discussion of high-quality information for the patients.
The median accuracy score was 5 out of 10, and the median DISCERN score was 38 out
of 80, and the percentage of low Likert scores among the respondents was higher than
the percentage of high Likert scores. Both presented a positive correlation after
the linear regression was performed. Thus, these data suggest that we have many websites
discussing UFs, but few of them present good quality of information for the patients.
Other gynecological diseases, such as pelvic organ prolapse, showed similar results[11] regarding incomplete web-based information. It is important to inform women where
the best reliable sources of information are, and this justifies the rationale for
performing these types of studies.
When analyzing the DISCERN scores, the intraclass coefficients were higher for all
questions, revealing that the results were similar to those of the respondents for
each question. However, the item -test correlation results were lower, suggesting
that each question may not be measuring the same construct when compared to other
questions. This should be seen with caution, because subjectivity plays a role in
lowering these values, and we have previous studies showing that the DISCERN instruments
may be heavily influenced by the opinion of the investigator, reducing the interaction
between the constructs of the questionnaire.[11]
[12] Nevertheless, a study has shown that the evidence-based quality rating and average
DISCERN ratings are similar for both consumers and health professionals.[13]
A total of 90% of the websites did not present the year of publication. Other studies
have found the same results.[12] It is already known that all information that is directly prepared for the patient
should be thoroughly discussed before publication, and the content should be updated
when any news arises regarding diagnosis and treatment.[14]
This is the first study analyzing the quality of information about UFs, a prevalent
disease in gynecology. Recently, a systematic review was performed for health information
online regarding endometriosis, another common disease, and the authors had the same
difficulty in finding accurate information, with most of the data having low quality.[15] We have also taken the care to specifically evaluate the professional and governmental
websites that are important referral sources for this disease. Cohen kappa coefficients
of 0.72 and 0.73 regarding these 2 criteria between our investigators suggest that
the agreement rate was high and reduced the risks of disagreements. However, some
limitations should be addressed. The inclusion of only English and Brazilian Portuguese
languages may have excluded other websites with potential higher scores, or may have
occulted a higher low rate of websites. There may be a selection bias, because not
all of the retrieved results were read; a criterion was applied to select them. However,
we actively sought for patient-health information websites that could contain reliable,
high-quality material by looking at the scientific association pages. Furthermore,
other studies did not analyze all the data on the Internet because there is a huge
amount of data to be scanned. Another point is that the DISCERN instrument includes
the subjectivity of the overall rating question, and does not assess certain additional
quality indicators of patient-health information, such as the readability. There are
some sites that are certified by Health on the Net (HON), but a previous study investigating
other gynecological diseases found low DISCERN scores that were HON-certified.[12]
Conclusion
The Internet is a tool that has been exhaustively used by patients to obtain information.
This might have the impact of expediting the decision-making process concerning the
treatment for UFs if women decide to consult the World Wide Web before a medical consultation.
We know that the retrieved results from a specific term may differ geographically
and due to financial reasons, and that accurate, good information may not be the first
option available to these women when they are seeking for data regarding their disease
and treatment options. We have also shown that, in the English language, most of the
websites are from hospitals, scientific organizations or federal government agencies,
and this may guide the providers to educate our patients. Future research is necessary,
with the inclusion of more variables, such as readability, and with the participation
of the patient as a consumer of the information. This will empower women with the
possibility of obtaining the best information to make informed choices.
