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Googling fibroids: A Critical Appraisal of Information Available on the Internet
Abstract
Objective
We aim to evaluate the accuracy, quality, and readability of online patient information concerning fibroids.
Study design
We searched the most popular Internet search engine: Google.com. We developed a search strategy in consultation with patients with fibroids, to identify relevant websites. Two independent authors screened the search results. Websites were evaluated using validated instruments across three domains, including assessments of: [1] quality (DISCERN instrument; range 0-85); [2] readability (Flesch-Kincaid instrument; range 0-100); and [3] accuracy. Accuracy was assessed using evidence-based statements. We summarised this data narratively including the use of figures and tables.
Results
We identified 750 websites, of which 48 were included. Over a third of websites did not attribute authorship and almost half the included websites did not report the sources of information or academic references. No website provided written patient information in line with recommendations from the American Medical Association. A minority (18%) of websites were assessed as high quality. Twelve webpages provided only accurate statements. Available information was, in general, skewed towards the surgical management of fibroids. No website scored highly across all three domains.
Conclusion
In the unlikely event that a website reports high quality and accurate health information, it is typically challenging for a lay audience to comprehend. Healthcare professionals and the wider community, should inform women with fibroids of the risk of outdated, inaccurate, or even dangerous information online. The implementation of an Information Standard certification will incentivise providers of online information to establish and adhere to codes of conduct.
... 10 In conditions such as PPROM, where decision-making is often complex, high-quality information that is easy to understand is likely to improve patients' ability to participate in decision-making and reduce anxiety. Systematic reviews of search engines have previously been used to assess available patient information in gynaecology [11][12][13] and further afield, for example in neurology. 14 The objective of this study was to assess systematically the accuracy, quality, readability and credibility of English language World Wide Web pages offering information on PPROM. ...
... Similar findings have been reported in gynaecological conditions, suggesting that this is a more widespread issue in women's health. [11][12][13] Even among higher-scoring sources in our study, contradictory international guidance (and a failure to highlight this) could affect trust in the healthcare system. The absence of information advising women of the risks of treatment, and that they can decide against treatments in part or entirely, reduces their autonomy. ...
Background
Preterm prelabour rupture of the membranes (PPROM) complicates 3% of pregnancies and is associated with an increased risk of maternal and perinatal morbidity and mortality. In an attempt to better understand this diagnosis, patients routinely resort to the internet for medical information. The lack of governance online leaves patients at risk of relying on low‐quality websites.
Objectives
To assess systematically the accuracy, quality, readability and credibility of World Wide Web pages on PPROM.
Search Strategy
Five search engines (Google, AOL, Yahoo, Ask and Bing) were searched with location services and browser history disabled. Websites from the first page of all searches were included.
Selection Criteria
Websites were included if they provided at least 300 words of health information aimed at patients relating to PPROM.
Data Collection and Analysis
Validated assessments of health information readability, credibility and quality were undertaken, as was an accuracy assessment. Pertinent facts for accuracy assessment were based on feedback from healthcare professionals and patients through a survey. Characteristics were tabulated.
Main Results
In all, 39 websites were included, with 31 different texts. No pages were written with a reading age of 11 years or less, none were considered credible, and only three were high quality. An accuracy score of 50% or more was obtained by 45% of websites. Information that patients considered pertinent was not consistently reported.
Conclusions
Search engines produce information on PPROM that is low quality, low accuracy and not credible. It is also difficult to read. This risks disempowerment. Healthcare professionals and researchers must consider how to ensure patients have access to information that they can recognise as high quality.
... Есть данные, что информация, изложенная на некоммерческих сайтах, является более точной, чем информация от коммерческих организаций [45]. Однако высококачественная информация, размещённая на интернет-ресурсе, как правило, изложена сложным языком, трудно воспринимаемым непрофессиональным читателем [46][47][48]. Тогда как полезной считается информация, основанная на фактических данных, с отказом от сложной терминологии и включением наглядных пособий. Тем не менее веб-сайты часто используются женщинами при возникновении вопросов по ГВ и оцениваются как полезные источники информации [23]. ...
Breastfeeding (BF) is generally accepted to provide significant health benefits both for the infant and mother. In this regard, the creation of a favourable environment for breastfeeding being of great social importance is supported by a number of measures at the state level. This review focuses on various social aspects of managing and supporting BF and raising women’s awareness of breastfeeding and nutrition during lactation. The results of recent studies have shown suboptimal nutrition during pregnancy and lactation in the context of changing nutrients to need significantly affects gene expression, which can affect the health of children both in the short and long term. In the context of constant “information noise”, it is important to implement scientific knowledge into sources available to pregnant and lactating women. For a targeted policy of healthy and long-lasting BF, government institutions need to build up marketing methods for promoting BF, using modern types of communication.
... This is consistent with the literature, which has demonstrated there is a lack of suitable online material on the subject. Hirsch et al showed that a 'google' search on the topic of fibroids does not result in any high quality, accurate, patient-focused websites and that 18% of available resources are outdated and inaccurate (Hirsch et al. 2020). Patient decision aids are routinely used in VBAC counselling often in the form of information leaflets outlining key points and predictors of success (Schoorel et al. 2014) but have yet to be developed in the context of myomectomy. ...
There is emerging evidence that vaginal birth after open and laparoscopic myomectomy may be safe in many pregnancies, however, there are no studies examining the perspectives of women who have given birth post myomectomy and their preferences regarding mode of birth. We performed a retrospective questionnaire survey of women who had an open or laparoscopic myomectomy followed by a pregnancy within 3 maternity units in a single NHS trust in the UK over a 5-year period. Our results revealed only 53% felt actively involved in the decision making for their birth plan and 90% had not been offered a specific birth options counselling clinic. Of those who had either a successful trial of labour after myomectomy (TOLAM) or elective caesarean section (ELCS) in the index pregnancy, 95% indicated satisfaction with their mode of birth however, 80% would prefer vaginal birth in a future pregnancy. Whilst long term prospective data is required to fully establish the safety of vaginal birth after laparoscopic and open myomectomy, this study is the first to explore the subjective experiences of women who had given birth post laparoscopic or open myomectomy and has highlighted the inadequate involvement of these women in the decision-making process.
IMPACT STATEMENT
What is already known on this subject? Fibroids are the commonest female solid tumours in women of childbearing age with surgical management including open and laparoscopic excision techniques. However, the management of a subsequent pregnancy and birth remains controversial with no robust guidance on which women may be suitable for vaginal birth.
What do the results of this study add? We present the first study to our knowledge which explores women’s experiences of birth and birth options counselling after open and laparoscopic myomectomy.
What are the implications of these findings for clinical practice and/or further research? We provide a rationale for using birth options clinics to facilitate an informed decision-making process and highlight the current inadequate guidance for clinicians on how to advise women having a pregnancy following a myomectomy. Whilst long term prospective data is required to fully establish the safety of vaginal birth after laparoscopic and open myomectomy, this needs to be carried out in a way which promotes the preferences of the women affected by this research.
... However, there is evidence of misinformation and poor quality information on the internet regarding endometriosis and other gynaecological conditions. [18][19][20] As such, we are advocates for continuing education programmes for healthcare professionals and gynaecologists on endometriosis diagnostic tools as an important avenue to improve the lay population's education. 21 In an international survey of gynaecologists, a minority of respondents used advanced TVS or MRI to evaluate patients with suspected endometriosis, and, in some regions, the availability of advanced TVS is potentially as low as 14%. ...
Objective:
To assess the general population's knowledge regarding the utility and availability of tools to diagnosis endometriosis, with a focus on ultrasound.
Design:
An international cross-sectional online survey study was performed between August and October 2019.
Setting and population:
5301 respondents, representing 73 countries.
Methods:
23 questions survey focused on knowledge of endometriosis diagnosis distributed globally via patient- and community-endometriosis groups using social media.
Main outcomes and measures:
Descriptive data of the knowledge of diagnostic tools for diagnosing endometriosis, including details about diagnosis using ultrasound.
Results:
84.0% of respondents had been previously diagnosed with endometriosis, 71.5% of which were diagnosed at the time of surgery. Ultrasound and MRI were the methods of diagnosis in 6.5% and 1.8%, respectively. 91.8%, 28.8%, and 16.6% of respondents believed surgery, ultrasound and MRI could diagnose endometriosis, respectively (more than one answer allowed). In those diagnosed by surgery, 21.7% knew about ultrasound as a diagnosis method compared to 51.5% knowing in those diagnosed non-surgically (p<0.001). 14.7%, 31.1%, and 18.2% stated superficial, ovarian, and deep endometriosis could be diagnosed with ultrasound (32.9% stated they did not know which phenotypes of endometriosis could be diagnosed). 58.4% of respondents do not believe they could access an advanced ultrasound in their region.
Conclusions:
There is a limited appreciation for the role of non-surgical diagnostic tests for endometriosis among lay respondents to this survey.
Minimal access techniques for fibroid management including transcervical resection of fibroids (TCRF), laparoscopic myomectomy and laparoscopic hysterectomy have widely documented advantages compared with open surgeries, although theyrequire specific surgical skills. Hirsch et al 1 recently highlighted the poor quality of patient information available on the topic of fibroids via generic internet searches and lack of patient-centred advice. Information regarding the different surgical interventions available, where these can be accessed, and unit outcomes are essential to enable women to make informed decisions about their care. A review of all fibroid operations in London over a one-year period (2018-2019) as a subset of interventions for fibroids in England. Information was obtained via NHS digital via Gynasonics. • 5507 surgical procedures were performed for fibroids in London • London alone accounted for 46% of the total number of myomectomies performed in England. • There was a wide variation in the laparoscopic myomectomy rates between trusts in London (0-50%). • This study illustrates in which London NHS trusts minimally invasive techniques for fibroid management are most frequently performed. It does not however include data on patient symptoms or presentations • Whilst minimal access techniques for the management of fibroids have well documented advantages for the patient in terms of length of stay, post-operative pain and recovery, specific skills are required especially in the context of laparoscopic myomectomy and as such not all women have access to these. • Long-term outcome sets for the surgical management of fibroids are lacking and there is much heterogeneity in the data available. Prospective data is required to investigate the appropriateness of minimal access techniques measured against patient presentations and preferences.
Uterine fibroids (UF) are noncancerous growths of the uterus and impact the livelihood of over 26 million women in the United States. Although UF may not have accompanying symptoms, for some women their presence leads to surgical treatment, which can be a difficult decision-making process. Web-scraping of online media is used to identify information-seeking behavior of women searching for UF treatment options. We synthesize the data to describe trends in UF treatment, including the identification of gaps between the information individuals are seeking (demand) and information that is publicly available as a resource (supply), which contributes to this study’s creation of the term “information desert.” We perform statistical analysis to understand information-seeking behavior, determine the gap between information supply and information demand, and determine the correlation between a doctor’s treatment recommendation and a patient’s treatment decision as a function of age, symptoms, and knowledge obtained about specific types of treatment.
Complications do occur in daily clinical life and can sometimes lead to litigation, which adversely affect the entire health care system, leading to a loss of confidence in medical providers, an increase in defensive medical practice and high professional indemnity insurance costs. Some complications are inevitable but can be minimised by completing a structured training programme. The likelihood of litigation can be reduced when adequate and clear information is given to the patient preoperatively. Non-technical skills are essential in complication management and crucial if confronted with litigation. Checklists and documentation of medication and surgical steps should be routine in all surgeries. Awareness of the complexity of the planned operation, theatre set-up and equipment are important in preventing complications. Mental preparation of surgeons is of the utmost importance in order to be able to confront any problem. When complications occur, remaining calm, calling for assistance, effective team leadership and harmony in the team are important in managing the situation. Good and effective communication with the patient and relatives, offering explanations, apologies and timely intervention without delays reduce the risk of litigation and strengthen any defence in court.
Objective There are no published studies analyzing the quality of the information for lay women on the Internet regarding uterine fibroids. The accuracy of the provided material is also unknown. Thus, we have performed a cross-sectional study with 381 websites in the English and Brazilian Portuguese languages between May and December 2017.
Methods Two investigators performed the analysis, and the Cohen kappa coefficient was calculated to analyze the agreement between them. Search terms (uterine fibroids and derivatives) in the English and Brazilian Portuguese languages were used. The accuracy was analyzed by a 10-item checklist created based on the American Society for Reproductive Medicine (ASRM), National Institutes of Health (NIH) and European Menopause and Andropause Society (EMAS) consensuses about uterine fibroids. The item–test correlation and the intraclass coefficient were performed in the 16 questions
from the DISCERN instrument, which was designed to measure the quality of health information on the Internet. Analysis of variance (ANOVA) measurements were performed for the independent variables and the DISCERN/accuracy scores.
Results Google was the most used search engine, and uterine fibroid was the search term that generated most of the analyzed material. 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 top-scoring sites in the English language were derived from scientific
organizations and federal governments, and they regarded the DISCERN score (The American College of Obstetricians and Gynecologists [ACOG], the Food and Drug Administration [FDA]) and the accuracy criteria (NIH, and FDA). On the other hand, in
the Brazilian Portuguese language, the highest scores in both instruments were from magazines or physician’s blogs. The Cronbach α test showed a higher correlation (0.77–0.79) between the sites and DISCERN; however, the item–test correlation varied from 0.39 to 0.56.
Conclusion There is a need to improve the quality of the information regarding uterine fibroids for lay women.
The purpose of this study was to evaluate the reading level of patient education material from selected current health care journals. Ten patient education pages from a variety of health care journals were entered into a Microsoft Word program. Applying the Flesch-Kincaid readability formula available from Microsoft Word, a reading level for each page was established and compared to recommended standards. Only 2 of 10 patient education pages fell within the recommended reading levels for health-related materials, and 5 of 10 were above the estimated mean U.S. reading level of 8th grade. A 5th to 6th grade level is recommended for patient education materials. This study suggests that although it is known that low health literacy is a widespread problem, it is not always considered when patient-targeted materials are developed. Health care professionals need to become more active in addressing the literacy needs of the intended receiver of written health-related information.
Objective
There is no systematic evaluation of online health information pertaining to obstetric anal sphincter injury. Therefore, we evaluated the accuracy, credibility, reliability, and readability of online information concerning obstetric anal sphincter injury.
Materials and methods
Multiple search engines were searched. The first 30 webpages were identified for each keyword and considered eligible if they provided information regarding obstetric anal sphincter injury. Eligible webpages were assessed by two independent researchers for accuracy (prioritised criteria based upon the RCOG Third and Fourth Degree Tear guideline); credibility; reliability; and readability.
Results
Fifty-eight webpages were included. Seventeen webpages (30%) had obtained Health On the Net certification, or Information Standard approval and performed better than those without such approvals (p = 0.039). The best overall performing website was http://www.pat.nhs.uk (score of 146.7). A single webpage (1%) fulfilled the entire criteria for accuracy with a score of 18: www.tamesidehospital.nhs.uk. Twenty-nine webpages (50%) were assessed as credible (scores ≥7). A single webpage achieved a maximum credibility score of 10: www.meht.nhs.uk. Over a third (21 out of 58) were rated as poor or very poor. The highest scoring webpage was http://www.royalsurrey.nhs.uk (score 62). No webpage met the recommended Flesch Reading Ease Score above 70. The intra-class coefficient between researchers was 0.98 (95% CI 0.96–0.99) and 0.94 (95% CI 0.89–0.96) for accuracy and reliability assessments.
Conclusion
Online information concerning obstetric anal sphincter injury often uses language that is inappropriate for a lay audience and lacks sufficient accuracy, credibility, and reliability.
The purpose of this systematic review is to evaluate if uterine myomas impact the likelihood of pregnancy and pregnancy loss, and if myomectomy influences pregnancy outcomes in asymptomatic women. There is insufficient evidence to conclude that the presence of myomas reduces the likelihood of achieving pregnancy. However, there is fair evidence that myomectomy (open or laparoscopic) for cavity-distorting myomas (intramural or intramural with a submucosal component) improves pregnancy rates and reduces the risk of early pregnancy loss. There is fair evidence that hysteroscopic myomectomy for cavity-distorting myomas improves clinical pregnancy rates but insufficient evidence regarding the impact of this procedure on the likelihood of live birth or early pregnancy loss. In women with asymptomatic cavity-distorting myomas, myomectomy may be considered to optimize pregnancy outcomes.
Introduction: The objectives of this study were (1) to assess the readability of Internet-based patient education materials related to acoustic neuromas (AN-IPEMs), using four widely validated readability indices; (2) to evaluate scores against the existing recommended sixth-grade reading level; and (3) to compare the readability scores of patient education materials (PEMs) produced by professional organizations, clinical practices, hospitals, and miscellaneous sources.
Materials and Methods: AN-IPEMs from 67 Web sites (9 professional societies, 33 clinical practices, 19 hospitals, and 6 miscellaneous sources) were assessed by Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FKGL), Simple Measure of Gobbledygook (SMOG), and Gunning Frequency of Gobbledygook (Gunning FOG). Scores were then evaluated against national recommendations by one-tailed t-tests and against each other using one-way ANOVAs.
Results: The average FKGL, SMOG, and Gunning FOG scores were all significantly higher than the recommended sixth-grade reading level suggested by the USDHHS (P < 0.0000, single sample one-tailed t-test). Zero articles, by all indices, had a reading level equal to or below the sixth-grade reading level. The FKGLs also varied among the various sources at a significant level (P = 0.01, one-way ANOVA independent samples). The average FKGLs of clinical practices and professional society AN-IPEMs were significantly higher than the average FKGLs of miscellaneous AN-IPEMs and hospital AN-IPEMs (both P ≤ 0.05, one-tailed t-tests assuming unequal variances).
Conclusions: AN-IPEMs are written at a level significantly higher than that suggested by national recommendations. Current AN-IPEMs may need to be revised and additional NIPEMs established to enhance patient comprehension and improve clinical outcomes.
Background:
The demand for health information online is increasing rapidly without clear governance.
Objective:
We aim to evaluate the credibility, quality, readability, and accuracy of online patient information concerning endometriosis.
Study design:
We searched 5 popular Internet search engines: aol.com, ask.com, bing.com, google.com, and yahoo.com. We developed a search strategy in consultation with patients with endometriosis, to identify relevant World Wide Web pages. Pages containing information related to endometriosis for women with endometriosis or the public were eligible. Two independent authors screened the search results. World Wide Web pages were evaluated using validated instruments across 3 of the 4 following domains: (1) credibility (White Paper instrument; range 0-10); (2) quality (DISCERN instrument; range 0-85); and (3) readability (Flesch-Kincaid instrument; range 0-100); and (4) accuracy (assessed by a prioritized criteria developed in consultation with health care professionals, researchers, and women with endometriosis based on the European Society of Human Reproduction and Embryology guidelines [range 0-30]). We summarized these data in diagrams, tables, and narratively.
Results:
We identified 750 World Wide Web pages, of which 54 were included. Over a third of Web pages did not attribute authorship and almost half the included pages did not report the sources of information or academic references. No World Wide Web page provided information assessed as being written in plain English. A minority of web pages were assessed as high quality. A single World Wide Web page provided accurate information: evidentlycochrane.net. Available information was, in general, skewed toward the diagnosis of endometriosis. There were 16 credible World Wide Web pages, however the content limitations were infrequently discussed. No World Wide Web page scored highly across all 4 domains.
Conclusion:
In the unlikely event that a World Wide Web page reports high-quality, accurate, and credible health information it is typically challenging for a lay audience to comprehend. Health care professionals, and the wider community, should inform women with endometriosis of the risk of outdated, inaccurate, or even dangerous information online. The implementation of an information standard will incentivize providers of online information to establish and adhere to codes of conduct.
As a leading cause of hysterectomy in premenopausal women, uterine leiomyomas are a major public health problem. However, very little work has been done on their epidemiology. Indeed, their true frequency has never been established using systematic and meticulous methods. In this study, gross serial sectioning at 2-mm intervals was applied as an adjunct to routine pathology processing in 100 consecutive total hysterectomy specimens. This tripled the number of leiomyomas noted in routine pathology reports. There were 649 leiomyomas in 77 of 100 uteri, with multiplicity of leiomyomas in 84%. Although leiomyomas were more numerous and larger in women with a clinical diagnosis of myomatous uterus, the incidence was no higher than in uteri removed for other reasons. The postmenopausal incidence of leiomyomas was no lower than the premenopausal incidence, although postmenopausal leiomyomas were smaller and fewer. These findings suggest that epidemiologic studies of leiomyomas may not be valid if they are based only on clinical diagnoses or routine pathology reports.
Submucous leiomyomas or myomas are commonly encountered by gynecologists and specialists in reproductive endocrinology and infertility with patients presenting with 1 or a combination of symptoms that include heavy menstrual bleeding, infertility, and recurrent pregnancy loss. There exists a variety of interventions that include those performed under hysteroscopic, laparoscopic and laparotomic direction; an evolving spectrum of image guided procedures, and an expanding number of pharmaceutical agents, each of which has value for the appropriately selected and counseled patient. Identification of the ideal approach requires the clinician to be intimately familiar with a given patient’s history, including her desires with respect to fertility, as well as an appropriately detailed evaluation of the uterus with any one or a combination of a number of imaging techniques, including hysteroscopy. This guideline has been developed following a systematic review of the evidence, to provide guidance to the clinician caring for such patients, and to assist the clinical investigator in determining potential areas of research. Where high level evidence was lacking, but where a majority of opinion or consensus could be reached, the guideline development committee provided consensus recommendations as well.
Between 40 and 44 million persons in the United States have rudimentary literacy skills, and are unable to understand written materials that require only basic reading proficiency. The purpose of this report is to characterize the current status of illiteracy in the United States, describe the relationship between poor literacy and poor health, and make recommendations on how to deal with patients who have poor reading skills. Data collected by the National Work Group on Literacy and Health indicate that one quarter of the US population has rudimentary reading skills, and another 25% has limited reading skills. This makes it difficult to have written communication with much of the US population. Poor reading skills are associated with poor health and greater use of health services, but the basis for this association is unclear. Instruments are available to measure patients' reading skills in clinical settings, and information can be transmitted to patients in ways that make it understandable to poor readers. However, it is not known if using special low-literacy education materials with these patients improves health outcomes. When written communication with low-literacy patients is essential, materials should be at the 5th-grade level or lower, supplemented by nonwritten communication. Simple and nonwritten materials are appropriate for persons with limited literacy, and also for those with well-developed literacy. Research is needed to clarify the mechanisms through which illiteracy influences health status and health services utilization, and to determine if using low-literacy health education materials improves health outcomes.
The objectives of this study were to assess the readability of Internet-based patient education materials related to acoustic neuromas (AN-IPEMs) by 4 widely validated readability indices, to evaluate scores against the existing sixth grade recommended reading level, and to compare the readability scores of patient education materials (PEMs) produced by professional organizations, clinical practices, hospitals, and miscellaneous sources.
AN-IPEMs from 67 web sites (6 professional societies, 33 clinical practices, 19 hospitals, and 9 miscellaneous) were assessed using Flesch Reading Ease Score (FRES), Flesch-Kincaid Grade Level (FKGL), Simple Measure of Gobbledygook (SMOG), and Gunning Frequency of Gobbledygook (Gunning FOG). Scores were then evaluated against national recommendations by 1-tailed t tests and against each other using 1-way ANOVAs.
The average FKGL, SMOG, and Gunning FOG scores were all significantly higher than the recommended sixth grade reading level suggested by the USDHHS (p < 0.0001, single sample 1-tailed t test). Zero articles, by all indices, had a reading level equal to or below the sixth grade reading level. The FKGLs also varied between the various sources at a significant level (p = 0.01 one-way ANOVA independent samples). The average FKGLs of clinical practice and professional society AN-IPEMs were significantly higher than the average FKGLs of hospital AN-IPEMs (both p ≤ 0.05 one-tailed t-tests assuming unequal variances).
AN-IPEMs are written at a level significantly higher than that suggested by national recommendations. Current AN-IPEMs may need to be revised in order to enhance patient comprehension.
Introduction and hypothesis:
Bladder pain syndrome (BPS) has an impact on quality of life and available treatments often only provide temporary symptomatic relief. The information provided by websites can be valuable for patient education and management. The hypothesis was to assess medical information available on the internet related to bladder pain syndrome in terms of accuracy, credibility, readability and quality.
Methods:
A search was performed in the meta-search engine Copernic Agent, using the search terms "bladder pain syndrome, interstitial cystitis, painful bladder syndrome and pelvic pain", which simultaneously captured websites from a range of engines. Websites in the English language that were open-access were included. The four quality assessments used were: credibility using a ten-point scale, accuracy based on the American Urological Association guidelines, quality using the DISCERN questionnaire and readability using the Flesch Reading Ease Score. Inter-rater agreement was tested by intra-class coefficient (ICC).
Results:
Eighteen suitable websites were identified; 7 (39%) were specialist or specific to BPS. The combined mean scores for accuracy, quality, credibility and readability ranged from 83 to 144 for specialist websites and 76 to 137 for non-specialist ones, with a maximum possible score of 208. There was good inter-observer agreement for the assessments performed with an ICC ranging from 0.80 for DISCERN to 0.53 for readability. Specialist websites had higher quality scores (median difference 10, p = 0.07) and readability scores (median difference 5.4, p = 0.05) compared with non-specialist websites whereas credibility and accuracy scores were no different.
Conclusion:
We found four websites that fulfilled our criteria for good quality information.
Risk factors for uterine fibroids were analyzed in a hospital-based case-control study conducted in the greater Milan area, based on 275 women with histologically confirmed fibroids and 722 controls with acute nongynecologic or hormone-related conditions. Questions were asked about menstrual and reproductive characteristics, education, history of various diseases, and lifetime use of oral contraceptives and other hormonal treatments. The risk of uterine fibroids was reduced in parous women relative to nulliparous ones (relative risk 0.6) and in those who were postmenopausal (relative risk 0.1 compared with premenopausal women of the same age). Women with fibroids tended to have an earlier age at menarche and at the last birth, to be more educated, and to use intrauterine devices and oral contraceptives more frequently, although these findings were not statistically significant. Current smoking (but not past smoking) lowered the fibroid risk by about 40%. No associations were found with body mass index, history of spontaneous or induced abortions, and age at first birth.
To quantify the incidence of uterine leiomyoma confirmed by hysterectomy, ultrasound, or pelvic examination according to age and race among premenopausal women.
From September 1989 through May 1993, 95,061 premenopausal nurses age 25-44 with intact uteri and no history of uterine leiomyoma were followed to determine incidence rates of uterine leiomyoma. The self-reported diagnosis was confirmed in 93% of the medical records obtained for a sample of cases. Using pooled logistic regression, we estimated relative risks (RRs) of uterine leiomyoma according to race and examined whether adjustment for other potential risk factors could explain the variation in the race-specific rates.
During 327,065 woman-years, 4181 new cases of uterine leiomyoma were reported. The incidence rates increased with age, and the age-standardized rates of ultrasound- or hysterectomy-confirmed diagnoses per 1000 woman-years were 8.9 among white women and 30.6 among black women. After further adjustment for marital status, body mass index, age at first birth, years since last birth, history of infertility, age at first oral contraceptive use, and current alcohol consumption, the rates among black women were significantly greater for diagnoses confirmed by ultrasound or hysterectomy (RR 3.25; 95% confidence interval [CI] 2.71, 3.88) and by hysterectomy (RR 1.82; 95% CI 1.17, 2.82) compared with rates among white women. We observed similar RRs when the cohort was restricted to participants who reported undergoing a screening physical examination within the 2 years before baseline.
A higher prevalence of known risk factors did not explain the excess rate of uterine leiomyoma among premenopausal black women.
The information revolution triggered by the rapid growth of the Internet has allowed healthcare providers and patients to access a rapidly expanding volume of information. To address the quality of this information, a survey of the data on a single urology-related topic available on the Internet was performed.
The search on the World Wide Web (Web) was performed using the search engine HotBot and search directory Yahoo. The Web pages were assessed according to their relevancy to the topic chosen. Relevance rates were derived from the number of relevant sites divided by the total number of sites found. Relevant sites were subsequently ranked for quality on the basis of their accuracy, comprehensiveness, and objectivity. HotBot was then subsequently divided by domain, with each assessed separately. Yahoo was analyzed in its entirety. The resources were then compared for relevance and quality of information.
When using the keyword "Viagra," HotBot responded with 15,109 hits. Yahoo presented 51 hits under the category, "Health: Pharmacy: Drugs and Medications: Specific Drugs and Medications: Viagra (Sildenafil)." The relevance rate for the first 50 hits in the search engine HotBot was 0.08. The relevance rates for the edu and org domains found by HotBot were 0.22 and 0.24, respectively; those for com and net were both 0.10. The relevance rate for the search directory Yahoo was 0.20. For relevant sites, the quality of the information presented was significantly higher in the Yahoo and in the HotBot domains hosted by nonprofit organizations when compared with HotBot in general and with its commercially oriented domains. HotBot overall was found to contain seven excellent sites, of which only three were found within Yahoo.
Although the medical information available on the Web has proliferated at a remarkable rate, the number of Web sites providing complete, nonbiased information continues to represent only a small portion of the total. We have shown that the search directory Yahoo reduced the number of irrelevant sites significantly, but at the same time, some very valuable information available in HotBot was missing. At present, it may be useful to conduct searches within Yahoo followed by a review of both the edu and org HotBot domains.
To develop a short instrument, called DISCERN, which will enable patients and information providers to judge the quality of written information about treatment choices. DISCERN will also facilitate the production of new, high quality, evidence-based consumer health information.
An expert panel, representing a range of expertise in consumer health information, generated criteria from a random sample of information for three medical conditions with varying degrees of evidence: myocardial infarction, endometriosis, and chronic fatigue syndrome. A graft instrument, based on this analysis, was tested by the panel on a random sample of new material for the same three conditions. The panel re-drafted the instrument to take account of the results of the test. The DISCERN instrument was finally tested by a national sample of 15 information providers and 13 self help group members on a random sample of leaflets from 19 major national self help organisations. Participants also completed an 8 item questionnaire concerning the face and content validity of the instrument.
Chance corrected agreement (weighted kappa) for the overall quality rating was kappa = 0.53 (95% CI kappa = 0.48 to kappa = 0.59) among the expert panel, kappa = 0.40 (95% CI kappa = 0.36 to kappa = 0.43) among information providers, and kappa = 0.23 (95% CI kappa = 0.19 to kappa = 0.27) among self help group members. Higher agreement levels were associated with experience of using the instrument and with professional knowledge of consumer health information. Levels of agreement varied across individual items on the instrument, reflecting the need for subjectivity in rating certain criteria. The trends in levels of agreement were similar among all groups. The final instrument consisted of 15 questions plus an overall quality rating. Responses to the questionnaire after the final testing revealed the instrument to have good face and content validity and to be generally applicable.
DISCERN is a reliable and valid instrument for judging the quality of written consumer health information. While some subjectivity is required for rating certain criteria, the findings demonstrate that the instrument can be applied by experienced users and providers of health information to discriminate between publications of high and low quality. The instrument will also be of benefit to patients, though its use will be improved by training.
Increasingly, consumers engage in health information seeking via the Internet. Taking a communication perspective, this review argues why public health professionals should be concerned about the topic, considers potential benefits, synthesizes quality concerns, identifies criteria for evaluating online health information and critiques the literature. More than 70 000 websites disseminate health information; in excess of 50 million people seek health information online, with likely consequences for the health care system. The Internet offers widespread access to health information, and the advantages of interactivity, information tailoring and anonymity. However, access is inequitable and use is hindered further by navigational challenges due to numerous design features (e.g. disorganization, technical language and lack of permanence). Increasingly, critics question the quality of online health information; limited research indicates that much is inaccurate. Meager information-evaluation skills add to consumers' vulnerability, and reinforce the need for quality standards and widespread criteria for evaluating health information. Extant literature can be characterized as speculative, comprised of basic 'how to' presentations, with little empirical research. Future research needs to address the Internet as part of the larger health communication system and take advantage of incorporating extant communication concepts. Not only should research focus on the 'net-gap' and information quality, it also should address the inherently communicative and transactional quality of Internet use. Both interpersonal and mass communication concepts open avenues for investigation and understanding the influence of the Internet on health beliefs and behaviors, health care, medical outcomes, and the health care system.
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Discern: An instrument for judging the quality of written consumer health information on treatment choices
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