Skip to main content
Canadian Journal of Kidney Health and Disease logoLink to Canadian Journal of Kidney Health and Disease
. 2019 Jul 30;6:2054358119863091. doi: 10.1177/2054358119863091

Content and Quality of Websites for Patients With Chronic Kidney Disease: An Environmental Scan

Michelle Smekal 1, Sarah Gil 1, Maoliosa Donald 1,2, Heather Beanlands 3, Sharon Straus 4,5, Gwen Herrington 6, Dwight Sparkes 6, Lori Harwood 7, Allison Tong 8, Allan Grill 9, Karen Tu 9, Blair Waldvogel 6, Chantel Large 6, Claire Large 6, Marta Novak 10, Matthew James 1,2, Meghan Elliott 1, Maria Delgado 6, Scott Brimble 11, Susan Samuel 2,12, Brenda R Hemmelgarn 1,2,
PMCID: PMC6668187  PMID: 31391944

Abstract

Background:

Although numerous websites for patients with chronic kidney disease (CKD) are available, little is known about their content and quality.

Objective:

To evaluate the quality of CKD websites, and the degree to which they align with information needs identified by patients with CKD.

Methods:

We identified websites by entering “chronic kidney disease” in 3 search engines: Google.com (with regional variants for Australia, Canada, the United Kingdom, and the United States), Bing.com, and Yahoo.com. We included the first 50 unique English-language sites from each search. We evaluated website content using a 30-point scale comprising 8 priority content domains identified by patients with CKD (understanding CKD, diet, symptoms, medications, mental/physical health, finances, travel, and work/school). We used standardized tools to evaluate usability, reliability, and readability (DISCERN, HONcode, LIDA, Reading Ease, and Reading Grade Level). Two reviewers independently conducted the search, screen, and evaluation.

Results:

Of the 2093 websites identified, 115 were included. Overall, sites covered a mean (SD) of 29% (17.8) of the CKD content areas. The proportion of sites covering content related to understanding CKD, symptoms, and diet was highest (97%, 80%, and 72%, respectively). The proportion of sites covering travel, finances, and work/school content was lowest (22%, 12%, and 12%, respectively). The mean (SD) scores for DISCERN, LIDA and HONcode were 68% (14.6), 71% (14.4), and 75% (17.2), respectively, considered above average for usability and reliability. The mean (SD) Reading Grade Level was 10.6 (2.8) and Reading Ease was 49.8 (14.4), suggesting poor readability.

Conclusions:

Although many CKD web sites were of reasonable quality, their readability was poor. Furthermore, most sites covered less than 30% of the content patients identified as important for CKD self-management. These results will inform content gaps in internet-accessible information on CKD self-management that should be addressed by future eHealth web-based tools.

Keywords: chronic kidney disease, online, internet, websites, self-management

What was known before

Patients often visit websites to access health information; however, little is known about the content and quality of online information available for patients with chronic kidney disease (CKD). Previous work has highlighted gaps in quality and reported poor readability; these studies have primarily focused on appraising some quality measures, including readability, in a limited number of websites. A comprehensive evaluation of both content and quality of information on websites is needed.

What this adds

Our study provides an assessment of local and international CKD website quality and summarizes the availability of information content areas identified as important by patients with CKD. This study highlights content and quality gaps in internet-accessible information on CKD that should be addressed by future web-based tools.

Introduction

Chronic kidney disease (CKD) affects approximately 10% of adults in Canada and contributes to significant morbidity, mortality, and health care expenditures.1 The trajectory of CKD progression may be improved by lifestyle modifications, such as diet and blood pressure management, and as a result, there is considerable interest in encouraging patients to self-manage aspects of their lifestyle, medical treatments, and symptom monitoring and management, with the goal of slowing disease progression.2-4 Numerous websites have been developed to support patient education for CKD; however, little is known about the content and quality of these websites, or the extent to which they address information needs identified by patients. Previous work evaluating CKD websites was limited to first page search results, is out-of-date, or was limited in scope (focusing on a small number of unique websites or limited to a specific geographic region or interest area such as living donor transplantation).5-10

The main objectives of this environmental scan were to (1) identify and evaluate CKD website quality (usability, reliability, and readability), and (2) summarize CKD content relative to self-management needs identified by CKD patients in our prior work.11

Methods

Search Strategy

Given the diversity in websites and data, an environmental scan was determined to be the optimal method to synthesize knowledge regarding the content and quality of websites for patients with CKD. We consulted with a medical library specialist at the University of Calgary to finalize our search strategy and search terms. We systematically searched the 3 most popular English-language search engines: GoogleTM, BingTM, and YahooTM.12 To account for potential geographic variation in search results, we included regional variants for the leading search engine, Google, which accounted for 71% of desktop and 89% of mobile traffic worldwide in the year preceding data collection.12 We searched “chronic kidney disease” in each of the search engines: Google.com (four separate searches with preferences set to Australia, Canada, the United Kingdom, and the United States), Bing.com, and Yahoo.com. “Chronic kidney disease” is a term commonly used by patients in website searches.5 In search engines, each search term is treated as a distinct keyword; therefore, while the search would prioritize sites with all 3 terms (and particularly those sites that repeat the key word[s]), it would also include sites with an individual term. Thus, “kidney disease” would capture the majority of sites, and inclusion of “chronic” would provide additional specificity.

Web traffic data, including Alexa Rank, was collected alongside the search and screen using a free chrome plug-in, SEOquake, which reports search engine optimization metrics for each website listed in the search results in the 3 search engines used in this study.13 Alexa rank is a metric of global website popularity relative to all other websites available and is calculated based on daily website traffic and page views over a 3-month period.14

Inclusion and Exclusion Criteria

We included only English-language websites. Websites that had nonfunctional links, required subscription to access content, or were discussion forums, blogs, scholarly journals or news articles were excluded. Eligible websites were recorded in a spreadsheet for further evaluation.

Website Screening

Two reviewers (M.D.S. and S.G.) independently searched and screened websites in September 2018 for inclusion. We followed the Canadian Agency for Drugs and Technologies in Health guidelines15 for systematically searching the internet. Websites were reviewed in descending order until 50 unique, eligible websites were identified from each search engine (ie, we did not include subsites of URLs already cataloged), or until at least 200 sites were screened for eligibility in each search. Websites were included if both reviewers agreed on their inclusion; conflicts and uncertainty were resolved by discussion and involvement of a third reviewer (B.R.H.).

Website Review and Data Extraction

The review occurred in 2 phases: (1) quality (usability, reliability, and readability) and (2) assessment of CKD content. Phase 1 was completed independently by 2 reviewers (M.D.S. and S.G.) for all sites. For Phase 2, each website was reviewed by 1 reviewer (divided equally between reviewers).

Phase 1: Quality assessment (usability, reliability, and readability)

We assessed eligible sites for quality using the validated DISCERN,16,17 Health on the Net (HON) Code of Conduct,18 and MinervaLIDAtion (LIDA)19 instruments. These tools are freely available online and have been used extensively to evaluate health website quality.20-28

The DISCERN tool includes 16 questions that evaluate reliability and quality of written health information. Similar to Lutz et al,5 we used the DISCERN tool without the 7-item subscale related to treatment choices, as treatment choices for CKD (dialysis, transplant) were not the focus of our review. Each question was rated on a 5-point Likert scale; the minimum overall score (excluding the treatment subscale) was 9 and the maximum was 45. Higher scores indicate greater quality and reliability. The DISCERN tool was originally developed for a “consumer,” rather than academic audience, although it has been used primarily by academic researchers to appraise written health information.29

The HONcode includes 14 questions that evaluate 8 overarching principles relating to justifiability, transparency, and financial disclosure, among other items. Each question is rated as present (1)/absent (0), with higher scores indicating greater compliance with HONcode standards. The HON Foundation has provided official certification for qualified websites since 1995 and the code is broadly known as an ethical standard for health websites.30

The LIDA instrument is a tool both to guide the development of and to evaluate health websites. The LIDA instrument includes 41 questions that assess accessibility, usability, and reliability. We used the LIDA instrument without the accessibility subscale, as the online accessibility checker tool is no longer available and some of the questions are not applicable to more recent website development advancements. For the usability and reliability sections, each question is rated on a 3-point scale; the minimum overall score for these sections is 0 and the maximum is 81. Higher scores indicate greater usability and reliability.

Readability was assessed using the Flesch Reading Ease (FRE) scale and Flesch-Kincaid Reading Grade Level (FKRGL).31-33 Similar to other studies5,9,10 we imported 200 to 400 words from each site into Microsoft Word and assessed the text using the readability statistics function, which reports both the FRE and FKRGL scales (MS Word 10, Microsoft Inc., Redmond, Washington). Both scales are calculated using word length, number of syllables per word, and number of words per sentence. FKRGL is reported as a numerical grade level and FRE is scored on a scale of 0 to 100, with lower scores suggesting poor readability. In general, a grade 6 reading level is recommended for patient education materials.34

Phase 2: Assessment of CKD content

We assessed all sites for specific content areas relating to information needs identified by CKD patients and their caregivers from a National CKD self-management study.11 Content areas included overarching categories of understanding CKD, diet, symptoms, medications, finances, mental/physical health, travel, and work/school. Several subcategories were identified under each broad category, resulting in 30 content areas in total.

We also categorized websites according to the audience(s) the site appeared to be tailored to (patient-focused, clinician-focused, or both) and by site type as follows: (1) academic/professional (universities, hospitals, and research centers); (2) nonprofit organizations, foundations, and charities; (3) commercial and pharmaceutical companies; and (4) other.

Rater Calibration

The 2 reviewers independently screened a convenience sample of 20 consecutive websites using the inclusion and exclusion criteria. After 2 rounds (40 websites), good agreement was achieved (κ = 0.92). Following the website screening activity, the 2 reviewers piloted the evaluation process by independently applying the assessment instruments to 5 randomly selected CKD sites. This process familiarized the reviewers to the instruments and identified interpretive differences for further discussion. Scoring differences were resolved by discussion. The reviewers conducted 3 sequential pilots (15 websites total). Following the first round, the percent agreement for the CKD content checklist was >90% and by the third round was ≥90% across all instruments (LIDA = 93.1%, κ = 0.52; HONcode = 97.7%, κ = 0.81; DISCERN = 90%, κ = 0.68).

Data Synthesis/Analysis

We used descriptive statistics (mean [percentage], SD, frequencies) to summarize quality and content scores. Scores demonstrating greater than 20% difference between raters were reviewed a second time and a final score was assigned by consensus. We reported the mean of the 2 raters’ results for scores with differences of less than 20%.

Results

Search Results and Website Characteristics

A total of 2093 sites were identified by the 2 reviewers (Figure 1). After ineligible sites and duplicates were removed from individual searches, 115 websites were eligible and included in the evaluation. The most common reasons for exclusion were duplicate websites, academic journals, and news articles. The number of websites identified in each search engine and the number of search engines each site appeared in are summarized in Figure 2. There was overlap in website identification across each of the searches, with some websites appearing in more than 1 search engine; however, only approximately 35% of websites were repeatedly identified in more than 3 search engines and 41% of websites appeared in a single search engine only. Websites were primarily targeted to a patient (56%) or patient and clinician audience (39%) and the majority of sites were developed by academic/professional centers (universities, hospitals, and research centers) (39%), followed by commercial and pharmaceutical companies (30%), nonprofit organizations, foundations and charities (29%), and other/unknown (1%).

Figure 1.

Figure 1.

CKD website review PRISMA flow diagram.

Note. CKD = chronic kidney disease.

aOther includes pdf documents, videos, clinic directories, veterinary clinics, practice guidelines, books, project descriptions.

Figure 2.

Figure 2.

Search engine results.

Note. CKD = chronic kidney disease.

CKD Content

Overall, sites covered a mean (SD) of 29% (17.8) of the 30 identified CKD content areas (Tables 1 and 2). The proportion of sites covering at least 1 content topic related to understanding CKD, symptoms, and diet was the highest (97%, 80%, and 72% respectively), and approximately half included content on mental/physical health (53%) and medications (52%). The proportion of sites covering travel, finances, and work/school content was low (22%, 12%, and 12%, respectively). There were a number of patient-identified information needs found in less than 10% of websites. This included those related to diet (options for eating out, practical tools for diet tracking), mental and physical support (screening tools for depression, how to communicate with others about mental health), finances (cost considerations for medications, food etc), travel (accessing health care abroad, what to bring), and work and school (supports and considerations for returning to work/retraining, how to discuss potential limitations with employer or school, and what should be disclosed and to whom). When stratified by website category (academic/professional, commercial/pharmaceutical, nonprofit/charity) or website audience (patient, clinician, both), there was minimal difference in the proportion of content topics covered by websites (Supplemental Table 1).

Table 1.

Proportion of Websites Addressing Specific CKD Content (n = 115).

Patient-identified information needs n (%)
Understanding CKD
 Basic information about CKD, what causes it, how to assess risk, understanding eGFR 107 (93.0)
 Basic information about kidneys/kidney function 93 (80.9)
 How to slow progression of CKD 88 (76.5)
 What to expect as CKD progresses and overall implications on lifestyle 61 (53.0)
Websites with at least 1 topic covered 111 (96.5)
Symptoms
 What are the symptoms of CKD, what causes them 89 (77.4)
 What to expect as CKD progresses 61 (53.0)
 Considerations for comorbidities and impact of treatments for other conditions 27 (23.5)
 How to manage symptoms, and when to seek help 24 (20.9)
Websites with at least 1 topic covered 92 (80.0)
Diet
 Information about diet/nutritional requirements, what types of changes need to be made 81 (70.4)
 How to identify renal friendly/unfriendly foods 41 (35.7)
 How to make modifications to prepared or ethnic foods 11 (9.6)
 Practical tools for diet tracking 10 (8.7)
 Options for eating out, including considerations for those with diabetes 6 (5.2)
Websites with at least 1 topic covered 83 (72.2)
Mental & Physical Support
 Physical wellness—exercise/activities to slow progression, potential restrictions 49 (42.6)
 Mental wellness, specifically related to isolation, depression 34 (29.6)
 Emotional/social support resources and peer support (eg, online peer support, face-to-face, etc) 27 (23.5)
 How to communicate with others about mental health 12 (10.4)
 Screening tools for depression 7 (6.1)
Websites with at least 1 topic covered 61 (53.0)
Medications
 Common medications for CKD, their indications, side effects to watch for, and long-term effects 59 (51.3)
 How to manage side effects, interactions between medications (traditional and alternative) for other illnesses/conditions 14 (12.2)
Websites with at least 1 topic covered 60 (52.2)
Travel
 Things to consider regarding travel and CKD, potential limitations 22 (19.1)
 Insurance 13 (11.3)
 Accessing health care abroad 10 (8.7)
 What to bring 7 (6.1)
Websites with at least 1 topic covered 25 (21.7)
Finances
 Resources and potential short- and long-term expenses, considerations relating to reduced workforce participation, medication/insurance coverage 14 (12.2)
 Cost considerations (medications, equipment, food etc) 4 (3.5)
Websites with at least 1 topic covered 14 (12.2)
Work and School
 Accommodating the work/school environment 13 (11.3)
 How to discuss potential limitations with employer/school 9 (7.8)
 Supports and considerations for returning to work/retraining 6 (5.2)
 What should be disclosed and to whom (HR, teacher etc) 4 (3.5)
Websites with at least 1 topic covered 14 (12.2)

Note. CKD = chronic kidney disease.

Table 2.

Website details including audience, rank, content and quality (n=115).

• = Reported
• = Not reported
Understanding CKD Diet Symptoms Medications Mental & physical support Finances Travel Work & school Proportion of content areas covered (%) DISCERN (%) LIDA HONcode (%) FRE (n/100) FKRGL
Website name: Website URL Audience Website category Website rank based on web traffic (Alexa Rank) Basic information about kidneys/kidney function Basic information about CKD, causes, how to assess risk, understanding eGFR How to slow CKD progression What to expect as CKD progresses and overall implications on lifestyle Information about diet/ nutritional requirements and what types of changes need to be made How to identify renal friendly/unfriendly foods How to make modifications to prepared or ethnic foods. Options for eating out, considerations for those with diabetes, Practical tools for diet/lab tracking. What are the symptoms of CKD, what causes them What to expect as CKD progresses How to manage symptoms, and when to seek help. Considerations for comorbidities and impact of treatments for other conditions Common medications for CKD, their indications, side effects to watch for/long term effects of medications How to manage side effects, interactions between medications (traditional and alternative) for other illnesses/ conditions. Mental wellness, isolation, depression Screening tools for depression How to communicate with others about mental health Emotional/social support, resources and peer support Physical wellness, exercise, activities to slow progression, potential restrictions Resources for potential short- and long-term expenses relating to CKD (reduced work) Cost considerations (medications, insurance, equipment, food etc) Things to consider regarding travel and CKD, potential limitations Insurance Accessing health care abroad What to bring Accommodating the work/school environment Supports and considerations for returning to work/retraining How to discuss potential limitations with employer/school What should be disclosed and to whom (HR, teacher) Usability (%) Reliability (%) Total (%)
Aboriginal Health Info Net https://healthinfonet.ecu.edu.au/key-resources/resources/?kw=kidney&searchIn_title=Yes&joiner=OR&pagenum=Yes&sorter=Yes Patient Academic/professional (universities, hospitals, and research centers) 27 (24.1K) 10.0 77.8 76.9 75.9 76.5 78.6 39.1 12.7
American Association of Kidney Patients https://aakp.org/ckdpredialysis-education/ Patient Nonprofit organizations, foundations, and charities 93 (2.21M) 33.3 63.3 60.2 50.0 56.8 50.0 41.2 14.2
American Heart Association http://www.heart.org/en/health-topics/diabetes/why-diabetes-matters/kidney-disease–diabetes Both Nonprofit organizations, foundations, and charities 24 (10.5K) 13.3 77.8 76.9 75.9 76.5 92.9 53.3 11.0
American Kidney Fund http://www.kidneyfund.org/ Patient Nonprofit organizations, foundations, and charities 54 (141K) 46.7 72.2 91.7 74.1 85.8 85.7 79.7 5.5
Australian Government Department of Health http://health.gov.au/internet/main/publishing.nsf/Content/chronic-kidney Both Academic/professional (universities, hospitals, and research centers) 39 (46.8K) 13.3 75.6 68.5 75.9 71.0 82.1 33.2 15.6
BC Government https://www2.gov.bc.ca/gov/content/health/practitioner-professional-resources/bc-guidelines/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 17 (7.76K) 30.0 78.9 68.5 61.1 66.0 75.0 13.1 17.1
BC Renal Agency http://www.bcrenalagency.ca/health-professionals/clinical-resources/chronic-kidney-disease-(ckd) Both Academic/professional (universities, hospitals, and research centers) 94 (2.26M) 50.0 78.9 86.1 74.1 82.1 85.7 53.0 9.3
Better Health Victoria State Government https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/kidney-failure Patient Academic/professional (universities, hospitals, and research centers) 33 (35.7K) 13.3 76.7 70.4 74.1 71.6 85.7 53.6 9.6
Bupa UK https://www.bupa.co.uk/health-information/urinary-bladder-problems/chronic-renal-failure Patient Commercial and pharmaceutical companies 45 (77.3K) 26.7 80.0 80.6 70.4 77.2 89.3 58.7 8.8
CDC https://www.cdc.gov/kidneydisease/basics.html Both Academic/professional (universities, hospitals, and research centers) 8 (2.20K) 16.7 77.8 81.5 85.2 82.7 89.3 57.5 9.2
CESPHN https://www.cesphn.org.au/general-practice/help-my-patients-with/chronic-disease-management/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 90 (2.02M) 6.7 61.1 74.1 59.3 69.1 53.6 28.6 15.0
Choosing Wisely https://choosingwiselycanada.org/chronic-kidney-disease/ Both Academic/professional (universities, hospitals, and research centers) 70 (669K) 13.3 67.8 68.5 63.0 66.7 53.6 67.7 7.2
CKD pathway http://www.ckdpathway.ca/ Provider Academic/professional (universities, hospitals, and research centers) 108 (6.34M) 16.7 81.1 80.6 75.9 79.0 67.9 37.6 14.2
Cleveland clinic https://my.clevelandclinic.org/health/diseases/15096-kidney-disease-chronic-kidney-disease Patient Academic/professional (universities, hospitals, and research centers) 20 (9.24K) 10.0 70.0 81.5 77.8 80.2 100.0 58.0 8.2
CorHealth Ontario https://www.corhealthontario.ca/resources-for-healthcare-planners-&-providers/quality-improvement-toolkits/chronic-kidney-disease-screening/Chronic-Kidney-Disease-Improving-screening-&-identification-of-CKD-for-adult-patients-in-Ontario Provider Academic/professional (universities, hospitals, and research centers) 107 (5.36M) 3.3 75.6 85.2 77.8 82.7 64.3 8.3 18.9
Davita http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease Patient Commercial and pharmaceutical companies 41 (49.9K) 93.3 74.4 92.6 75.9 87.0 78.6 57.8 9.6
Diabetes UK https://www.diabetes.org.uk/Guide-to-diabetes/Complications/Kidneys_Nephropathy Both Nonprofit organizations, foundations, and charities 52 (104K) 13.3 63.3 81.5 75.9 79.6 78.6 64.0 8.0
DPC Education Center http://www.dpcedcenter.org/chronic-kidney-disease Patient Nonprofit organizations, foundations, and charities 97 (2.63M) 53.3 65.6 75.9 74.1 75.3 82.1 58.0 9.9
Drugs.com https://www.drugs.com/mcd/chronic-kidney-disease Patient Commercial and pharmaceutical companies 14 (3.16K) 30.0 70.0 72.2 74.1 72.8 100.0 44.6 11.6
eMedicine Health https://www.emedicinehealth.com/chronic_kidney_disease/article_em.htm Patient Commercial and pharmaceutical companies 22 (10.1K) 36.7 63.3 77.8 79.6 78.4 100.0 46.2 11.4
Fairview https://www.fairview.org/patient-education/86310 Both Nonprofit organizations, foundations, and charities 37 (45.8K) 13.3 51.1 72.2 68.5 71.0 71.4 63.2 7.3
Family Doctor https://familydoctor.org/condition/chronic-kidney-disease-ckd/ Both Nonprofit organizations, foundations, and charities 40 (49.4K) 23.3 75.6 88.0 75.9 84.0 100.0 74.1 5.2
Fresenius Kidney Care https://www.freseniuskidneycare.com/about-chronic-kidney-disease/stages/chronic-kidney-disease-ckd-stages Patient Commercial and pharmaceutical companies 62 (411K) 66.7 66.7 87.0 75.9 83.3 71.4 55.7 10.2
Fresenius Australia https://www.fmc-au.com/community/articles/250-world-kidney-day-raising-awareness-for-chronic-kidney-disease Both Commercial and pharmaceutical companies 101 (2.96M) 13.3 55.6 74.1 66.7 71.6 60.7 36.2 12.3
Fresenius Medical Care https://www.freseniusmedicalcare.com/en/patients-families/family-caregivers/ Both Commercial and pharmaceutical companies 71 (769K) 20.0 62.2 88.9 75.9 84.6 75.0 52.9 9.9
Good To Go Insurance https://www.goodtogoinsurance.com/medical-travel-insurance/chronic-kidney-disease Patient Commercial and pharmaceutical companies 69 (656K) 16.7 43.3 56.5 46.3 53.1 42.9 58.3 9.5
Guy’s & St. Thomas Kidney Patients’ Association http://www.gsttkpa.org/ Patients Nonprofit organizations, foundations, and charities 58 (208K) 10.0 62.2 76.9 70.4 74.7 57.1 57.6 8.7
HCA Healthcare https://hcahealthcare.com/hl/?/Yes03Yes58/Lifestyle-Changes-to-Manage-Chronic-Kidney-Disease Both Commercial and pharmaceutical companies 56 (158K) 16.7 52.2 64.8 66.7 65.4 85.7 76.4 5.5
Health Care Siemens—Australia https://www.healthcare.siemens.com.au/laboratory-diag0stics/assays-by-diseases-conditions/kidney-disease Both Commercial and pharmaceutical companies 72 (812K) 10.0 70.0 81.5 77.8 80.2 71.4 29.7 18.1
Health Direct Australia https://www.healthdirect.gov.au/chronic-kidney-disease Patient Academic/professional (universities, hospitals, and research centers) 35 (44.1K) 13.3 81.1 76.9 88.9 80.9 92.9 52.4 10.2
Health Insight Nevada https://healthinsight.org/nv-patients-family/498-chronic-kidney-disease Both Nonprofit organizations, foundations, and charities 87 (1.66M) 0.0 65.6 71.3 66.7 78.4 78.6 20.3 15.6
Health Line—CKD https://www.healthline.com/health/chronic-kidney-disease Patient Nonprofit organizations, foundations, and charities 4 (529) 20.0 67.8 74.1 74.1 74.1 96.4 50.1 8.8
HealthLink BC https://www.healthlinkbc.ca/healthy-eating/early-chronic-kidney-disease Patient Academic/professional (universities, hospitals, and research centers) 48 (91.1K) 36.7 78.9 77.8 85.2 80.2 85.7 63.8 7.6
Health Services Executive https://www.hse.ie/eng/health/az/c/chronic-kidney-disease/ Both Academic/professional (universities, hospitals, and research centers) 36 (45K) 30.0 67.8 75.9 83.3 78.4 78.6 58.3 9.4
Health& https://healthand.com/au/topic/general-report/chronic-kidney-disease Patient Commercial and pharmaceutical companies 88 (1.93M) 10.0 61.1 86.1 74.1 82.1 85.7 42.3 11.8
Healthwise—Sask Health online https://www.healthwise.net/saskhealthlineonline/Content/StdDocument.aspx?DOCHWID=aa65427 Patient Academic/professional (universities, hospitals, and research centers) 53 (113K) 30.0 80.0 74.1 94.4 80.9 78.6 69.4 6.5
Info KID https://www.infokid.org.uk/chronic-kidney-disease-ckd Patient Academic/professional (universities, hospitals, and research centers) 85 (1.58M) 20.0 65.6 81.5 63.0 75.3 64.3 69.8 7.2
Jama https://jamanetwork.com/journals/jama/fullarticle/2524193 Both Academic/professional (universities, hospitals, and research centers) 21 (9.32K) 16.7 71.1 78.7 83.3 80.2 92.9 43.5 11.4
Kidney ABC (Tongshantang Hospital) http://www.kidneyabc.com/ckd/ * Patient Commercial and pharmaceutical companies 64 (492K) 20.0 41.1 71.3 44.4 62.3 32.1 59.8 7.7
Kidney Care UK https://www.kidneycareuk.org/about-kidney-health/conditions/ckd/ Patient Nonprofit organizations, foundations, and charities 91 (2.02M) 60.0 83.3 94.4 77.8 88.9 71.4 48.5 12.2
Kidney Cares Community (Tongshantang Hospital) http://www.kidney-cares.org/ckd-treatment/ * Patient Commercial and pharmaceutical companies 82 (1.23M) 20.0 35.6 67.6 46.3 60.5 42.9 43.4 12.1
Kidney Disease (Tongshantang Hospital) http://www.renaldiseases.org/ckd/ * Patient Commercial and pharmaceutical companies 104 (3.64M) 20.0 40.0 74.1 51.9 66.7 42.9 41.8 13.1
Kidney Disease Symptoms (Tongshantang Hospital) http://www.kidney-symptom.com/chronic-kidney-disease/ * Patient Commercial and pharmaceutical companies 81 (1.21M) 20.0 40.0 68.5 50.0 62.3 42.9 53.1 9.1
Kidney Disease Treatment Center (Tongshantang Hospital) http://www.kidney-support.org/ckd/ * Patient Commercial and pharmaceutical companies 99 (2.77M) 20.0 40.0 68.5 50.0 62.3 42.9 41.8 12.7
Kidney Failure (Tongshantang Hospital) http://www.kidneyfailureweb.com/ckd/ * Patient Commercial and pharmaceutical companies 76 (962K) 26.7 40.0 70.4 53.7 64.8 39.3 37.7 12.7
Kidney Foundation of Canada https://www.kidney.ca/kidney-disease Patient/caregiver Nonprofit organizations, foundations, and charities 73 (846K) 63.3 70.0 88.9 51.9 76.5 64.3 47.1 11.4
Kidney Health Australia https://kidney.org.au/your-kidneys/detect/kidney-disease/stages-of-chronic-kidney-disease-787 Both Nonprofit organizations, foundations, and charities 68 (617K) 53.3 73.3 90.7 81.5 87.7 78.6 39.1 12.2
Kidney Patient Guide http://www.kidneypatientguide.org.uk/financial.php Patient Nonprofit organizations, foundations, and charities 95 (2.39M) 50.0 79.4 86.1 72.2 81.5 92.9 56.4 9.2
Kidney Research UK https://www.kidneyresearchuk.org/health-information/chronic-kidney-disease Patient Nonprofit organizations, foundations, and charities 74 (869K) 20.0 66.7 79.6 63.0 74.1 78.6 50.7 11.0
Kidney School https://www.kidneyschool.org/ Both Nonprofit organizations, foundations, and charities 98 (2.71M) 36.7 70.0 84.3 59.3 75.9 64.3 71.4 7.1
Kidney Services China (Tongshantang Hospital) http://www.kidneyservicechina.com/stage-3-ckd/ * Patient Commercial and pharmaceutical companies 96 (2.41M) 23.3 40.0 64.8 25.9 51.9 39.3 47.3 11.2
Kidney Support Network http://ksn.org.au/ Patient Nonprofit organizations, foundations, and charities 114 (14.4M) 13.3 48.9 77.8 51.9 69.1 50.0 51.1 9.2
Kidney Treatment (Tongshantang Hospital) http://www.kidney-treatment.org/ckd/ * Patient Commercial and pharmaceutical companies 84 (1.49M) 13.3 40.0 63.0 31.5 52.5 32.1 35.4 16.2
Kidney Wales https://www.kidneywales.cymru/about-kidney-disease/what-is-kidney-disease/stages-chronic-kidney-disease/ Patient Nonprofit organizations, foundations, and charities 113 (13.9M) 16.7 64.4 75.0 57.4 69.1 57.1 58.6 9.0
Kids Health https://kidshealth.org/en/parents/chronic-kidney-disease.html Both Nonprofit organizations, foundations, and charities 25 (10.7K) 23.3 75.6 89.8 81.5 87.0 85.7 50.2 10.7
Lab Tests Online https://labtestsonline.org/conditions/kidney-disease Both Commercial and pharmaceutical companies 32 (31.1K) 20.0 81.1 74.1 74.1 74.1 100.0 48.9 10.9
Life Line Screening https://www.lifelinescreening.com/screening-services/chronic-kidney-disease-screening Patient Commercial and pharmaceutical companies 59 (293K) 6.7 65.6 82.4 66.7 77.2 64.3 36.3 10.8
Life Options https://lifeoptions.org/learn-about-kidney-disease/ patients Nonprofit organizations, foundations, and charities 60 (404K) 56.7 70.0 81.5 59.3 74.1 67.9 84.2 4.5
London Health Sciences http://www.lhsc.on.ca/Patients_Families_Visitors/Renal/AdjustingtoKidneyDisease/Travel/index.htm Both Academic/professional (universities, hospitals, and research centers) 51 (103K) 50.0 75.6 85.2 74.1 81.5 71.4 42.9 11.7
Long Island kidney and hypertension http://www.kidneyandhypertensioncare.com/chronic-kidney-disease.php Patient Academic/professional (universities, hospitals, and research centers) 112 (13.4M) 10.0 53.3 52.8 57.4 54.3 53.6 47.5 11.4
Manitoba Renal Program http://www.kidneyhealth.ca/wp/kidney-disease/ Both Academic/professional (universities, hospitals, and research centers) 105 (4.62M) 60.0 73.3 63.0 55.6 60.5 64.3 55.1 9.7
Mayo clinic https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-2035452Yes Both Nonprofit organizations, foundations, and charities 7 (1.24K) 46.7 77.8 76.9 77.8 77.2 100.0 48.9 10.5
Med Broadcast https://medbroadcast.com/condition/getcondition/chronic-renal-failure Patient Commercial and pharmaceutical companies 44 (67.5K) 40.0 61.1 63.9 48.1 58.6 75.0 37.0 11.4
Medical Dictionary https://medical-dictionary.thefreedictionary.com/kidney+disease Unknown Commercial and pharmaceutical companies 6 (636) 40.0 65.6 52.8 44.4 50.0 67.9 35.0 13.1
Medical News Today https://www.medicalnewstoday.com/articles/172179.php Both Commercial and pharmaceutical companies 10 (2.61K) 33.3 83.3 68.5 72.2 69.8 100.0 48.4 10.3
Medicine Net https://www.medicinenet.com/script/main/art.asp?articlekey=30944 Patient Commercial and pharmaceutical companies 11 (2.86K) 50.0 77.8 71.3 77.8 73.5 100.0 45.2 12.0
Medline Plus https://medlineplus.gov/chronickidneydisease.html Patient Academic/professional (universities, hospitals, and research centers) 13 (3.12K) 20.0 74.4 62.0 72.2 65.4 92.9 72.5 5.9
MedScape https://emedicine.medscape.com/article/238798-overview Clinician Academic/professional (universities, hospitals, and research centers) 9 (2.47K) 16.7 77.8 72.2 77.8 74.1 96.4 29.8 13.8
Merck Manuals—professional (MSD) https://www.merckmanuals.com/professional/genitourinary-disorders/chronic-kidney-disease/chronic-kidney-disease Clinician Commercial and pharmaceutical companies 31 (27.8K) 33.3 82.2 73.1 75.9 74.1 82.1 14.0 16.2
Merck Manuals-consumer (also MSD) https://www.merckmanuals.com/en-ca/home/kidney-and-urinary-tract-disorders/kidney-failure/chronic-kidney-disease-ckd Patient Commercial and pharmaceutical companies 30 (27.7K) 30.0 71.1 69.4 70.4 69.8 82.1 33.9 12.9
Mount Sinai https://www.mountsinai.org/health-library/diseases-conditions/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 29 (24.9K) 40.0 76.7 63.9 64.8 64.2 75.0 73.4 6.2
My Doctor http://www.mydr.com.au/health-images/chronic-kidney-disease Patient Commercial and pharmaceutical companies 46 (83.7K) 50.0 82.2 75.9 70.4 74.1 100.0 58.4 9.6
My Kidney https://www.mykidney.org/home.aspx Patient Academic/professional (universities, hospitals, and research centers) 100 (2.81M) 36.7 65.6 63.9 40.7 56.2 53.6 65.0 8.0
My VMC https://www.myvmc.com/diseases/kidney-disease-chronic-renal-failure/ Both Academic/professional (universities, hospitals, and research centers) 50 (93.9K) 30.0 75.6 77.8 85.2 80.2 96.4 47.6 11.5
MyHealth Alberta https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=aa65427 Patient Academic/professional (universities, hospitals, and research centers) 26 (11.5K) 43.3 83.3 77.8 81.5 79.0 85.7 67.7 6.8
NIDDK https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd Both Academic/professional (universities, hospitals, and research centers) 2 (153) 60.0 80.0 73.1 79.6 66.0 82.1 69.1 6.7
National Kidney Center http://www.nationalkidneycenter.org/chronic-kidney-disease/ Patient Nonprofit organizations, foundations, and charities 83 (1.25M) 36.7 72.2 65.7 63.0 64.8 71.4 58.9 8.7
National Kidney Federation UK https://www.kidney.org.uk/help-and-info/medical-information-from-the-nkf-/medical-info-ckd-info/ Patient Nonprofit organizations, foundations, and charities 77 (981K) 40.0 68.9 77.8 70.4 75.3 78.6 60.6 9.3
National Kidney Foundation https://www.kidney.org/atoz/content/about-chronic-kidney-disease Both Nonprofit organizations, foundations, and charities 42 (50.4K) 76.7 77.8 66.7 53.7 62.3 92.9 55.2 9.1
National Kidney Foundation of Illinois http://www.nkfi.org/education/chronic-kidney-disease Both Nonprofit organizations, foundations, and charities 89 (2.01M) 26.7 62.2 75.9 64.8 72.2 67.9 53.2 9.5
Nephcure https://nephcure.org/livingwithkidneydisease/what-is-kidney-disease/ Both Nonprofit organizations, foundations, and charities 78 (1.0M) 50.0 74.4 51.9 37.0 46.9 75.0 49.6 10.7
Net Wellness http://www.netwellness.org/healthtopics/kidney/kidneytreatment.cfm Unknown Nonprofit organizations, foundations, and charities 75 (912K) 26.7 73.3 83.3 81.5 82.7 75.0 36.2 13.6
NHS https://www.nhs.uk/conditions/kidney-disease/symptoms/ Patient Academic/professional (universities, hospitals, and research centers) 15 (3.36K) 50.0 74.4 77.8 79.6 78.4 92.9 62.4 8.7
NHS Inform https://www.nhsinform.scot/illnesses-and-conditions/kidneys-bladder-and-prostate/chronic-kidney-disease Patient Academic/professional (universities, hospitals, and research centers) 47 (85.0K) 56.7 76.7 66.7 63.0 65.4 89.3 59.1 9.1
NI Direct Government Services https://www.nidirect.gov.uk/conditions/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 34 (42.5K) 20.0 68.9 77.8 88.9 81.5 71.4 61.0 8.4
NICE Pathways UK https://pathways.nice.org.uk/pathways/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 28 (24.6K) 30.0 87.8 80.6 79.6 80.2 82.1 33.9 13.2
NRS Healthcare https://www.nrshealthcare.co.uk/articles/condition/chronic-kidney-disease Patient Commercial and pharmaceutical companies 63 (481K) 36.7 61.1 61.1 50.0 57.4 64.3 50.7 11.6
Ontario Renal Network http://www.renalnetwork.on.ca/info_for_patients/kidney_disease/ Both Academic/professional (universities, hospitals, and research centers) 109 (7.2M) 23.3 70.0 74.1 64.8 71.0 78.6 51.8 9.7
Patient https://patient.info/doctor/chronic-kidney-disease-pro Both Nonprofit organizations, foundations, and charities 19 (9.02K) 40.0 84.4 75.9 79.6 77.2 100.0 51.5 9.9
PHN Central and Eastern Australia https://www.cesphn.org.au/general-practice/help-my-patients-with/chronic-disease-management/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 92 (2.02M) 3.3 58.9 64.8 59.3 61.7 53.6 26.6 17.4
Renal Support Network http://www.rsnhope.org/kidney-disease-health-library/ Both Nonprofit organizations, foundations, and charities 86 (1.62M) 60.0 58.9 66.7 53.7 62.3 60.7 54.0 9.6
Rexall https://www.rexall.ca/articles/view/253/Chronic-Renal-Failure Patient Commercial and pharmaceutical companies 55 (146K) 30.0 61.1 67.6 55.6 63.6 60.7 46.3 12.1
Rogosin Institute http://www.rogosin.org/patient-care/kidney-disease/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 106 (4.65M) 6.7 58.9 74.1 44.4 64.2 57.1 41.2 11.9
Saskatoon Health Region http://www.saskatoonhealthregion.ca/locations_services/Services/Kidney-Health/Pages/Chronic-Kidney-Disease-Clinic.aspx Patient Academic/professional (universities, hospitals, and research centers) 66 (537K) 23.3 73.3 67.6 68.5 67.9 85.7 51.2 10.3
Scottish Kidney Federationa http://scotskidneyfederation.org/ckd-information.html Patient Nonprofit organizations, foundations, and charities NA n/a 57.8 69.4 57.4 65.4 60.7 39.7 12.0
Shire Canada https://www.shirecanada.com/patients/therapeutic-areas/chronic-kidney-disease Patient Commercial and pharmaceutical companies 103 (3.59M) 10.0 57.8 69.4 57.4 65.4 60.7 39.7 12.0
St Agnes Surgery http://www.stagnessurgery.com.au/chronic-kidney-disease.html Patient Academic/professional (universities, hospitals, and research centers) 110 (8.09M) 23.3 55.6 68.5 46.3 61.1 67.9 32.3 15.2
Standford Healthcare https://stanfordhealthcare.org/medical-conditions/liver-kidneys-and-urinary-system/kidney-failure.html Both Academic/professional (universities, hospitals, and research centers) 38 (46.2K) 10.0 66.7 73.1 57.4 67.9 67.9 46.4 9.8
Sunnybrook hospital https://sunnybrook.ca/content/?page=intro-chronic-kidney-disease-treatment Patient Academic/professional (universities, hospitals, and research centers) 49 (93.8K) 13.3 75.6 79.6 64.8 74.7 75.0 38.0 9.4
The Renal Association https://renal.org/information-resources/the-uk-eckd-guide/ckd-stages/ Clinician Academic/professional (universities, hospitals, and research centers) 65 (520K) 60.0 82.2 75.0 72.2 74.1 82.1 39.9 13.5
The Royal Melbourne Hospital https://www.thermh.org.au/health-professionals/clinical-services/nephrology/chronic-kidney-disease Both Academic/professional (universities, hospitals, and research centers) 61 (405K) 6.7 67.8 71.3 68.5 70.4 78.6 35.7 12.9
Think Kidneys https://www.thinkkidneys.nhs.uk/ckd/information-for-the-public/ Patient Nonprofit organizations, foundations, and charities 102 (3.22M) 23.3 71.1 79.6 66.7 75.3 67.9 60.9 9.4
UC San Diego Health https://health.ucsd.edu/specialties/nephrology/Pages/chronic-kidney-disease.aspx Patient Academic/professional (universities, hospitals, and research centers) 12 (2.95K) 43.3 78.9 75.9 70.4 74.1 75.0 45.7 11.1
UCSF Department of surgery https://surgery.ucsf.edu/conditions–procedures/chronic-kidney-disease.aspx Both Academic/professional (universities, hospitals, and research centers) 18 (8.53K) 33.3 72.2 72.2 68.5 71.0 85.7 72.8 6.4
UNC Kidney Center https://unckidneycenter.org/kidneyhealthlibrary/chronic-kidney-disease-1/ Both Academic/professional (universities, hospitals, and research centers) 79 (1.07M) 40.0 66.7 70.4 59.3 66.7 71.4 56.8 9.3
UptoDate https://www.uptodate.com/contents/chronic-kidney-disease-beyond-the-basics Both Commercial and pharmaceutical companies 16 (5.23K) 23.3 83.3 59.3 92.6 70.4 82.1 42.3 11.3
UW Health https://www.uwhealth.org/health/topic/major/kidney-disease-chronic/aa65427.html Patient Academic/professional (universities, hospitals, and research centers) 43 (59.8K) 40.0 66.7 63.9 59.3 62.3 60.7 67.7 6.8
Very Well Health https://www.verywellhealth.com/chronic-kidney-disease-overview-1132509 Patient Nonprofit organizations, foundations, and charities 23 (10.4K) 43.3 86.7 84.3 85.2 84.6 100.0 42.3 13.1
Web MD https://www.webmd.com/a-to-z-guides/understanding-kidney-disease-basic-information Both Commercial and pharmaceutical companies 5 (599) 33.3 71.1 84.3 85.2 84.6 100.0 68.0 7.2
Welling Homeopathy https://www.wellinghomeopathy.com/treatment-of-chronic-kidney-disease-ckd/ Patient Commercial and pharmaceutical companies 67 (569K) 16.7 35.6 66.7 50.0 61.1 42.9 39.0 13.6
Western Nephrology http://westneph.com/chronic-kidney-disease/ Both Academic/professional (universities, hospitals, and research centers) 111 (11.8M) 10.0 52.2 74.1 40.7 63.0 64.3 38.2 12.8
Wiki How https://www.wikihow.com/Create-a-Kidney-Diet-to-Reverse-Chronic-Kidney-Disease Patient Commercial and pharmaceutical companies 3 (179) 6.7 68.9 74.1 85.2 77.8 78.6 58.3 8.9
Wikipedia https://en.wikipedia.org/wiki/Chronic_kidney_disease Both Nonprofit organizations, foundations, and charities 1 (5) 26.7 72.2 71.3 79.6 74.1 92.9 18.5 14.5
World Kidney Day https://www.worldkidneyday.org/faqs/chronic-kidney-disease/ Patient Nonprofit organizations, foundations, and charities 80 (1.13M) 26.7 64.4 81.5 64.8 75.9 60.7 50.9 10.0
Your MD https://www.your.md/condition/kidney-disease-chronic/ Patient Commercial and pharmaceutical companies 57 (196K) 46.7 73.3 82.4 79.6 81.5 75.0 60.7 8.1

Note. CKD = chronic kidney disease; FRE = Flesch Reading Ease; FKRGL = Flesch-Kincaid Reading Grade Level; eGFR = estimated glomerular filtration rate; CDC = Centers for Disease Control and Prevention; CESPHN = Central and Eastern Sydney Primary Health Network; DPC = Dialysis Patient Citizens; VMC = Virtual Medical Center; NIDDK = National Institute of Diabetes and Digestive and Kidney Diseases; NHS = National Health Service.

a

Website became unavailable during evaluation.

*

Website link no longer accessible on 9 July 2019.

The top 10 websites covering the greatest proportion of CKD content areas were Davita (93.3%), National Kidney Foundation (76.7%), Fresenius Kidney Care (66.7%), Kidney Foundation of Canada (63.3%), Kidney Care UK (60%), Manitoba Renal Program (60%), National Institute of Diabetes and Digestive and Kidney Diseases (60%), Renal Support Network (60%), The Renal Association (60%), Life Options (56.7%), and NHS Inform (56.7%).

Website Quality (Reliability, Usability, and Readability)

Most websites demonstrated moderate to high reliability and usability (Table 3); however, there was considerable variability across all websites, with scores as low as 35% in some cases. There was little variability when comparing mean scores of each instrument. The mean (SD) DISCERN score was 68.1% (14.6), LIDA was 71.0% (14.4), and HONcode was 74.6% (17.2). Although there was only slight variation in most scores, 2 usability measures were comparatively low across all sites: engagability (57%) and currency of presented information (51%). There was considerable variation in readability across all websites; the mean (SD) FKRGL was grade 10.6 (2.8) and FRE was 49.8 (14.4), suggesting poor readability. When stratified by website category (academic/professional, commercial/pharmaceutical, nonprofit/charity) or website audience (patient, clinician, both), there was minimal difference in quality scores across most quality metrics (Supplemental Table 1). The DISCERN, HONcode, and LIDA Reliability scores were slightly higher for websites geared toward a clinician audience; however, there were only 3 clinician-specific websites included in our evaluation. Readability did not differ based on website category or audience.

Table 3.

Mean Quality and Readability Assessment Scores for Reviewed Sites (n = 115).

Measurement Mean score
% (±SD)
DISCERN
 Are the aims clear? 79.0 (7.9)
 Does it achieve its aims? 73.0 (10.6)
 Is it relevant? 70.0 (11.4)
 Is it clear what sources of information were used to compile the publication (other than the author or producer)? 62.4 (19.3)
 Is it clear when the information used or reported in the publication was produced? 63.5 (20.4)
 Is it balanced and unbiased? 66.1 (14.4)
 Does it provide details of additional sources of support and information? 68.3 (19.6)
 Does it refer to areas of uncertainty? 62.5 (13.6)
 Overall rating of the publication 67.9 (14.6)
DISCERN total score 68.1 (14.6)
LIDA
Usability measures
  Clarity 77.3 (10.9)
  Consistency 82.4 (10.9)
  Functionality 79.2 (7.6)
  Engagability 57.1 (14.7)
  Currency 50.9 (14.8)
Reliability measures
  Conflicts of interest 86.4 (14.2)
  Content production 63.9 (20.4)
LIDA total score 71.0 (14.4)
HON code 74.6 (17.2)
FRE Mean FRE (±SD)
49.8 (14.4)
FKRGL Mean Grade (±SD)
10.6 (2.8)

Note. FRE = Flesch Reading Ease; FKRGL = Flesch-Kincaid Reading Grade Level.

The top 10 websites for each quality metric are included in Table 4. There was some variability in the websites achieving the highest quality scores across each quality metric; however, several sites scored in the top 10 across multiple quality metric categories (including American Kidney Fund, Kidney Care UK, Medical news Today, My Doctor, Family Doctor, MyHealth Alberta, UpToDate, and Very Well Health).

Table 4.

Top 10 Websites According to Quality Criteriaa.

Overall rank DISCERN (%) LIDA
Readability
Usability (%) Reliability (%) Flesch reading ease Flesch-Kincaid reading grade level
1 NICE Pathways UK (87.78) Kidney Care UK (94.4) Health Wise Saskatchewan (94.4) Life Options (84.2) Life Options (4.5)
2 Very Well Health (86.67) Davita (92.6) UpToDate (92.6) American Kidney Fund (79.7) Family Doctor (5.2)
3 Patient (84.44) American Kidney Fund (91.7) NI Direct Government Services (88.9) HCA Healthcare (76.4) American Kidney Fund (5.5)
4 Medical News Today (83.33) Kidney Health Australia (90.7) Health Direct Australia (88.9) Family Doctor (74.1) HCA Healthcare (5.5)
5 UpToDate (83.33) Kids Health (89.8) Very Well Health (85.2) Mount Sinai (73.4) Medline Plus (5.9)
6 MyHealth Alberta (83.33) Kidney Foundation of Canada (88.9) Web MD (85.2) UCSF Department of Surgery (72.8) UCSF Department of Surgery (6.4)
7 Kidney Care UK (83.33) Fresenius Medical Care (87) CDC (85.2) Medline Plus (72.5) Health Wise Saskatchewan (6.5)
8 Merck Manuals—Professional (82.22) Kidney Patient Guide (86.1) HealthLink BC (85.2) Kidney School (71.4) NIDDK (6.7)
9 My Doctor (82.22) BC Renal Agency (86.1) My Virtual Medical Center (85.2) Info KID (69.8) MyHealth Alberta (6.8)
10 The Renal Association (82.22) Health& (86.1) Wiki How (85.2) Health Wise Saskatchewan (69.4) UW Health (6.8)

Note. CDC = Centers for Disease Control and Prevention; NIDDK = National Institute of Diabetes and Digestive and Kidney Diseases.

a

HON Code—12 websites scored 100.0%: Cleveland Clinic; Drugs.com; eMedicine Health; Family Doctor; Lab Tests Online; Mayo Clinic; Medical News Today; Medicine Net; My Doctor; Patient; Very Well Health; WebMD.

Website Traffic

There was considerable variability in website traffic measured using Alexa Rank. The Alexa Rank ranged from 5 (Wikipedia) to 14.4M (Kidney Support Network). Websites with the highest traffic (Table 5) tended to be general health websites offering information on multiple medical conditions. One exception was the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which ranked second overall for website traffic in our results (Alexa Rank 153). Most websites with the highest web traffic covered less than 40% of content topics (ranging from 6.7% [Wiki How] to 60% [NIDDK]), had quality scores above 70% in most cases (ranging from 44.4 [Medical Dictionary] to 100 [WebMD, Mayo Clinic, Medical News Today]), and readability ranged from grade 6.7 (NIDDK) to grade 14.5 (Wikipedia).

Table 5.

Top 10 Websites According to Website Traffic (Alexa Rank).

Website name Website rank based on web traffic (Alexa Rank) Proportion of content areas covered (%) DISCERN (%) LIDA
HON code (%) Readability
Usability (%) Reliability (%) Flesch reading ease Flesch–Kincaid reading grade level
Wikipedia 1 (5) 26.7 72.22 71.3 79.6 92.9 18.5 14.5
NIDDK 2 (153) 60.0 80 73.1 79.6 82.1 69.1 6.7
Wiki How 3 (179) 6.7 68.89 74.1 85.2 78.6 58.3 8.9
Health Line–CKD 4 (529) 20.0 67.78 74.1 74.1 96.4 50.1 8.8
Web MD 5 (599) 33.3 71.11 84.3 85.2 100.0 68.0 7.2
Medical Dictionary 6 (636) 40.0 65.56 52.8 44.4 67.9 35.0 13.1
Mayo clinic 7 (1240) 46.7 77.78 76.9 77.8 100.0 48.9 10.5
CDC 8 (2200) 16.7 77.78 81.5 85.2 89.3 57.5 9.2
MedScape 9 (2470) 16.7 77.78 72.2 77.8 96.4 29.8 13.8
Medical News Today 10 (2610) 33.3 83.33 68.5 72.2 100.0 48.4 10.3

Note. NIDDK = National Institute of Diabetes and Digestive and Kidney Diseases; CKD = chronic kidney disease; CDC = Centers for Disease Control and Prevention.

Discussion

We completed a comprehensive review of CKD websites to evaluate their quality as well as content relative to 8 overarching information needs identified by CKD patients in our prior work.11 Of the 115 websites included, we found that they were of reasonably high quality, as assessed using validated instruments. However, their mean reading grade level was grade 11, much higher than recommended for a general patient audience, and information related to travel, finances, and work/school in particular was very limited.

We found considerable variation in content covered across all websites, with the majority of websites including information on less than 30% of the information needs expressed by patients as important for self-management.11 Information related to understanding CKD, symptoms, and diet were included across most of the websites; however, content related to travel, finances, and work/school considerations was particularly lacking and, where available, was not tailored to a Canadian audience. Our review also highlighted deficiencies in content related to mental health, including screening tools for depression and strategies to communicate with others about mental health, and content related to dietary and self-management needs, such as practical tools for tracking diet and laboratory data and guidance on eating in restaurants. In addition, the website content was often difficult to navigate and required considerable time searching for the topics listed in our content checklist.

We also found considerable variability in website traffic measured using Alexa Rank, with the highest ranking (correlating to the greatest traffic) being general health websites and not specific to CKD. In fact, the websites with the highest traffic covered less than 40% of the content areas and information needs identified by patients with CKD. Furthermore, both quality and readability were similar irrespective of the website category or audience.

While previous CKD website reviews focused on quality and readability assessment,5,10 a recent evaluation35 of CKD mobile applications available in the Apple Store, Google Play, and 360 Mobile Assistant included a review of content topics identified as important to CKD self-management.36 Similar to our review, Lee et al found that most of the mobile applications contained less than 60% of the information topics assessed and found considerable content gaps relating to managing medications (11.8% of apps), engaging and sustaining social support (6.4% of apps), and maintaining social and occupational roles (0% of apps).35 These findings reveal a consistent need to improve the comprehensiveness of content relating to patient-identified self-management information needs across all eHealth platforms.

When compared with earlier studies,5,10 our evaluation revealed some improvement in website quality, particularly with regard to referencing the source of content and discussing areas of uncertainty, although this finding could be due to the larger number of websites evaluated in our review. Readability, however, continues to be a significant issue with the majority of sites written for a grade 10, or higher, audience. Weiss34 recommends that written health information be targeted to a grade 6 audience to ensure that patients with a range of health literacy are able to understand presented information. Similar to other studies appraising CKD websites,5,10 we found that most CKD websites had a reading grade level greater than the 10th grade, or rated “difficult” to “very difficult.” As patient-focused health resources are increasingly developed for and accessed from an online environment,37 this finding highlights the ongoing need to reduce the complexity of online health information and improve the accessibility of the language used.

Strengths of our study include a broad search methodology and inclusion of 1 popular search engines encompassing results from Australia, Canada, the United Kingdom, and the United States. We used 3 different measures of usability and reliability, with 2 reviewers completing the evaluation independently. The 2 reviewers also independently measured readability using 2 different methods for all sites.

Our study does, however, have limitations. We limited our review to English-language websites, and although we screened >2000 websites and included 115 in our evaluation, our search terms were limited to “chronic kidney disease” so it is possible we inadvertently missed CKD websites that did not include these terms, although these are the terms most commonly used by patients with CKD.5 In addition, websites may change rapidly over time and the content and quality may change as websites are updated and new content and features are added; therefore, the results are reflective of the website content and quality at the time of our review.

Our study provides a comprehensive review of CKD websites and includes regional variants within the search strategy, allowing broad identification and evaluation of international sites. Our results highlight the lack of tailored, comprehensive online information for CKD, and identify specific information and quality gaps in need of attention. These results will inform content gaps in internet-accessible information on CKD self-management that should be addressed by future eHealth web-based tools.

Supplemental Material

SuppTable_1._Mean_score_based_on_website_category_and_audience_17May2019 – Supplemental material for Content and Quality of Websites for Patients With Chronic Kidney Disease: An Environmental Scan

Supplemental material, SuppTable_1._Mean_score_based_on_website_category_and_audience_17May2019 for Content and Quality of Websites for Patients With Chronic Kidney Disease: An Environmental Scan by Michelle Smekal, Sarah Gil, Maoliosa Donald, Heather Beanlands, Sharon Straus, Gwen Herrington, Dwight Sparkes, Lori Harwood, Allison Tong, Allan Grill, Karen Tu, Blair Waldvogel, Chantel Large, Claire Large, Marta Novak, Matthew James, Meghan Elliott, Maria Delgado, Scott Brimble, Susan Samuel and Brenda R. Hemmelgarn in Canadian Journal of Kidney Health and Disease

Acknowledgments

The authors would like to acknowledge James Wick for Stata technical support.

Footnotes

Ethics Approval and Consent to Participate: Not applicable, as this study did not involve human subjects or information.

Consent for Publication: All authors consent to the publication of this study.

Authors’ Note: The results presented in this article have not been published in whole or part elsewhere.

Author Contributions: All authors in this study have contributed to this article and approve of this submission. M.D.S., S.G., and B.R.H. contributed to the study design and drafted the article. All authors contributed to the design and provided critical revisions to this article.

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the Can-SOLVE CKD Network, which is supported by The Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR). Dr Hemmelgarn is supported by the Roy and Vi Baay Chair in Kidney Research. Dr Tu is supported by a research scholar award from the Department of Family and Community Medicine at the University of Toronto.

Supplemental Material: Supplemental material for this article is available online.

References

  • 1. Arora P, Vasa P, Brenner D, et al. Prevalence estimates of chronic kidney disease in Canada: results of a nationally representative survey. CMAJ. 2013;185(9):E417-E423. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2. Chen SH, Tsai YF, Sun CY, Wu IW, Lee CC, Wu MS. The impact of self-management support on the progression of chronic kidney disease—a prospective randomized controlled trial. Nephrol Dial Transplant. 2011;26(11):3560-3566. [DOI] [PubMed] [Google Scholar]
  • 3. Havas K, Bonner A, Douglas C. Self-management support for people with chronic kidney disease: patient perspectives. J Ren Care. 2016;42(1):7-14. [DOI] [PubMed] [Google Scholar]
  • 4. Novak M, Costantini L, Schneider S, Beanlands H. Approaches to self-management in chronic illness. Semin Dial. 2013;26(2):188-194. [DOI] [PubMed] [Google Scholar]
  • 5. Lutz ER, Costello KL, Jo M, et al. A systematic evaluation of websites offering information on chronic kidney disease. Nephrol Nurs J. 2014;41(4):355-363;364. [PMC free article] [PubMed] [Google Scholar]
  • 6. Manchanda PK, Bid HK. E-nephrology. Indian J Nephrol. 2011;21(1):1-9. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 7. Moody EM, Clemens KK, Storsley L, Waterman A, Parikh CR, Garg AX. Improving on-line information for potential living kidney donors. Kidney Int. 2007;71(10):1062-1070. [DOI] [PubMed] [Google Scholar]
  • 8. Rodrigue JR, Feranil M, Lang J, Fleishman A. Readability, content analysis, and racial/ethnic diversity of online living kidney donation information. Clin Transplant. 2017;31(9):e13039. doi:10.1111/ctr.13039 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 9. Azer SA, Alghofaili MM, Alsultan RM, Alrumaih NS. Accuracy and readability of websites on kidney and bladder cancers. J Cancer Educ. 2018;33(4):926-944. [DOI] [PubMed] [Google Scholar]
  • 10. Jaffery JB, Becker BN. Evaluation of eHealth web sites for patients with chronic kidney disease. Am J Kidney Dis. 2004;44(1):71-76. [DOI] [PubMed] [Google Scholar]
  • 11. Donald M, Beanlands H, Straus S, et al. Identifying needs for self-management interventions for adults with chronic kidney disease and their caregivers: a qualitative study [published online ahead of print April 2, 2019]. AJKD. doi: 10.1053/j.ajkd.2019.02.006. [DOI] [Google Scholar]
  • 12. Beattie M, Shepherd A, Lauder W, Atherton I, Cowie J, Murphy DJ. Development and preliminary psychometric properties of the Care Experience Feedback Improvement Tool (CEFIT). BMJ Open. 2016;6(6):e010101. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 13. SEOQuake Chrome Toolbar. https://www.seoquake.com/index.html. Accessed May 21, 2019.
  • 14. Amazon Alexa. Alexa Traffic Rank. https://www.alexa.com/about. Accessed May 21, 2019.
  • 15. Canadian Agency for Drugs and Technology (CADTH). Grey matters: a practical tool for searching health-related grey literature. Ottawa, ON: Canadian Agency for Drugs and Technology. Published 2018. https://www.cadth.ca/resources/finding-evidence. Accessed May 21, 2019.
  • 16. DISCERN Online. www.discern.org.uk/index.php. Accessed August 13, 2018.
  • 17. Charnock D, Shepperd S, Needham G, Gann R. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health. 1999;53(2):105-111. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18. Sandelowski M. Whatever happened to qualitative description. Res Nurs Health. 2000;23(4):334-340. [DOI] [PubMed] [Google Scholar]
  • 19. Tomlin ABD. The Minervation validation instrument for healthcare websites (LIDA tool). www.minervation.com. 2007. Accessed August 13, 2018.
  • 20. Best J, Muzaffar J, Mitchell-Innes A. Quality of information available via the internet for patients with head and neck cancer: are we improving. Eur Arch Otorhinolaryngol. 2015;272(11):3499-3505. [DOI] [PubMed] [Google Scholar]
  • 21. Bruce-Brand RA, Baker JF, Byrne DP, Hogan NA, McCarthy T. Assessment of the quality and content of information on anterior cruciate ligament reconstruction on the internet. Arthroscopy. 2013;29(6):1095-1100. [DOI] [PubMed] [Google Scholar]
  • 22. Cerminara C, Santarone ME, Casarelli L, Curatolo P, ElMalhany N. Use of the DISCERN tool for evaluating web searches in childhood epilepsy. Epilepsy Behav. 2014;41:119-121. [DOI] [PubMed] [Google Scholar]
  • 23. Downing MA, Omar AH, Sabri E, McCarthy AE. Information on the internet for asplenic patients: a systematic review. Can J Surg. 2011;54(4):232-236. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 24. Gouveia CJQH, Kern R, Yung-Chuan L, Capasso R. An assessment of online information related to sleep apnea treatment. Sleep Sci Pract. 2017;1:6. [Google Scholar]
  • 25. Khazaal Y, Chatton A, Zullino D, Khan R. HON label and DISCERN as content quality indicators of health-related websites. Psychiatr Q. 2012;83(1):15-27. [DOI] [PubMed] [Google Scholar]
  • 26. Lewiecki EM, Rudolph LA, Kiebzak GM, Chavez JR, Thorpe BM. Assessment of osteoporosis-website quality. Osteoporos Int. 2006;17(5):741-752. [DOI] [PubMed] [Google Scholar]
  • 27. Wong LM, Yan H, Margel D, Fleshner NE. Urologists in cyberspace: a review of the quality of health information from American urologists’ websites using three validated tools. Can Urol Assoc J. 2013;7(3-4):100-107. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 28. Azer SA, AlOlayan TI, AlGhamdi MA, AlSanea MA. Inflammatory bowel disease: an evaluation of health information on the internet. World J Gastroenterol. 2017;23(9):1676-1696. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 29. Griffiths KM, Christensen H. Website quality indicators for consumers. J Med Internet Res. 2005;7(5):e55. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 30. Nater T, Boyer C. Debate about evaluation and monitoring of sites carrying the HON-Logo. J Med Internet Res. 2000;2(2):E13. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 31. Graber MA, Roller CM, Kaeble B. Readability levels of patient education material on the World Wide Web. J Fam Pract. 1999;48(1):58-61. [PubMed] [Google Scholar]
  • 32. Kincaid JFR, Rogers R, Chissom B. Derivation of new readability formulas: automated reliability index, fog count, and Flesch reading ease formula for Navy enlisted personnel. Branch report 8-75. Millington, TN; 1975. [Google Scholar]
  • 33. Flesch R. How to Test Readability. New York, NY: Harper; 1951. [Google Scholar]
  • 34. Weiss B. Health Literacy: A manual for Clinicians: American Medical Association Foundation and American Medical Association. Chicago, IL: American Medical Association; 2006. [Google Scholar]
  • 35. Lee YL, Cui YY, Tu MH, Chen YC, Chang P. Mobile health to maintain continuity of patient-centered care for chronic kidney disease: content analysis of apps. JMIR Mhealth Uhealth. 2018;6(4):e10173. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 36. Havas K, Douglas C, Bonner A. Person-centred care in chronic kidney disease: a cross-sectional study of patients’ desires for self-management support. BMC Nephrol. 2017;18(1):17. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 37. Powell JA, Darvell M, Gray JA. The doctor, the patient and the world-wide web: how the internet is changing healthcare. J R Soc Med. 2003;96(2):74-76. [DOI] [PMC free article] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

SuppTable_1._Mean_score_based_on_website_category_and_audience_17May2019 – Supplemental material for Content and Quality of Websites for Patients With Chronic Kidney Disease: An Environmental Scan

Supplemental material, SuppTable_1._Mean_score_based_on_website_category_and_audience_17May2019 for Content and Quality of Websites for Patients With Chronic Kidney Disease: An Environmental Scan by Michelle Smekal, Sarah Gil, Maoliosa Donald, Heather Beanlands, Sharon Straus, Gwen Herrington, Dwight Sparkes, Lori Harwood, Allison Tong, Allan Grill, Karen Tu, Blair Waldvogel, Chantel Large, Claire Large, Marta Novak, Matthew James, Meghan Elliott, Maria Delgado, Scott Brimble, Susan Samuel and Brenda R. Hemmelgarn in Canadian Journal of Kidney Health and Disease


Articles from Canadian Journal of Kidney Health and Disease are provided here courtesy of SAGE Publications

RESOURCES