evaluating the quality of information for sickle cell anaemia...
TRANSCRIPT
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Evaluating the Quality of Information for Sickle Cell Anaemia Patients on the
Web
A study submitted in partial fulfilment of the requirements of Master of Science in Information
Management
At
The University of Sheffield
By
Ore-Ofe Oladiran Registration Number (SpLD 130117788)
September 2014
3
ABSTRACT
Background
With the easy access to information on the internet, many people of the public have
resorted to researching various symptoms and treatments of medical conditions.
Despite the fact that the masses have been advised to consult medical
professionals, some do not heed this advice. The information that is provided on the
internet is of various quality standards. Therefore, one may wonder about the quality
of information on the internet for sickle cell anaemia patients. There are various tools
that have been developed in order to assess the quality of information on health
related websites. Additionally, a disease specific tool was developed solely for this
study. Lastly, the readability of the websites is a factor that needs to be scrutinised.
Aims
The main aim of this study is to evaluate the quality of information for sickle cell
anaemia patients on the internet.
Methodology
The term ‘sickle cell anaemia’ was entered into the search box in order to retrieve
the websites that a patient would likely stumble across. A total of fifty websites were
selected from both Yahoo and Google search engines were retrieved. The HON
Code, DISCERN (generic tools), Flesch Readability Ease, Flesch-Kincaid Grade
Level (readability tools) and the sickle cell anaemia tools were used to assess the
websites. Additionally, the tools were analysed for their reliability, validity and
feasibility.
Results
Firstly, it was discovered that majority of the websites do not discuss possible
consequences if treatment is not sought. Secondly, majority of the websites do not
provide an online community group or allow patients to share their experiences. The
readability tests showed that 90% of the websites had a grade level score above 6.0-
7.9 whilst the maximum level is 6.
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Conclusion
Majority of the websites performed well when analysed by the evaluation tools.
However, 90% of them performed poorly in terms of the readability of the websites.
The internet is a useful resource for patients and their families/carers. Nevertheless,
it is still advisable for patients to refer to a medical practitioner before attempting to
start any form of treatment (home remedies included).
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Contents CHAPTER 1: INTRODUCTION & CONTEXT........................................................................ 7
1.1 Introduction to the Study .............................................................................................. 7
1.2 Brief Explanation of Sickle Cell Anaemia Disease ....................................................... 7
1.3 Research Aims and Objectives .................................................................................. 10
1.4 Structure of the Dissertation ...................................................................................... 10
1.5 Summary ................................................................................................................... 11
CHAPTER 2: LITERATURE REVIEW ................................................................................. 12
2.1 Introduction ................................................................................................................ 12
2.2 Sources and Search Strategy .................................................................................... 12
2.3 Health Information on the Internet.............................................................................. 13
2.4 Health Information in Regards to Medical Conditions ................................................ 13
2.5 Information Needs of Sickle Cell Anaemia Patients ................................................... 15
2.5.1 Sickle Cell Anaemia Websites ............................................................................. 18
2.6 Tools Used In Evaluating the Quality of Health Information ....................................... 19
2.7 Summary ................................................................................................................... 20
CHAPTER 3: METHODOLOGY .......................................................................................... 21
3.1 Introduction ................................................................................................................ 21
3.2 Research Approach ................................................................................................... 21
3.3 Website Selection Method ......................................................................................... 22
3.4 Tools for Data Collection ........................................................................................... 23
3.5 Search Strategy ......................................................................................................... 25
3.6 Selection and Application of Tools ............................................................................. 25
3.7 Summary ................................................................................................................... 25
CHAPTER 4: RESULTS ..................................................................................................... 27
4.1 Introduction ................................................................................................................ 27
4.2 Description of the websites ........................................................................................ 27
4.3 Results of information quality assessments by each tool ........................................... 28
Figure 4.6 Results of information quality using the evaluation tools (Sites 20 -38)
........................................................................................................................................... 32
4.4 Readability Scores ..................................................................................................... 33
4.5 Histogram Graphs ..................................................................................................... 38
4.6 Reliability, Feasibility and Validity of Tools ................................................................. 43
4.7 Summary ................................................................................................................... 48
CHAPTER 5 DISCUSSION ................................................................................................. 49
5. 1 Introduction ............................................................................................................... 49
5.2 Information of the Quality of Information .................................................................... 49
5.3 Appraisal of Evaluation Tools .................................................................................... 50
5.4 Summary ................................................................................................................... 51
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CHAPTER 6 CONCLUSIONS ........................................................................................... 53
6.1 Introduction ................................................................................................................ 53
6.2 Key Findings: Quality of Information on Websites for Sickle Cell Anaemia Patients ... 53
6.3 Achievements of Aims and Objectives ....................................................................... 53
6.4 Contribution of this Study ........................................................................................... 54
6.5 Limitations of study .................................................................................................... 54
6.6 Recommendations for Future Research .................................................................... 55
6.7 Summary ................................................................................................................... 55
REFERENCES ................................................................................................................... 56
APPENDICES ................................................................................................................. 61
Appendix 1: List of Websites ........................................................................................... 61
Appendix 2: Evaluation Tools .......................................................................................... 63
Appendix 3: Results of Evaluation Tools .......................................................................... 68
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CHAPTER 1: INTRODUCTION & CONTEXT
1.1 Introduction to the Study
This dissertation is aimed at answering the research question which is to ‘Evaluate
the Quality of Information for Sickle Cell Anaemia Patients on the Web’. An in- depth
discussion is given for the importance for patients to have access to good quality
information via the internet. An analysis of fifty websites is given. The researcher
retrieved these websites by using the two of the most common search engines which
are Google and Yahoo. Upon completion of the analysis of the websites, the
researcher presents the websites that provide quality information through the use of
five data analysis tools.
1.2 Brief Explanation of Sickle Cell Anaemia Disease
Sickle cell anaemia was not known until the early 1900’s- even after the discovery of
the disease, it was “described as a very rare entity” (Reynolds: 1965, pp. 14). The
sickle cell condition is a genetic/hereditary blood condition (WHO: 2005).
The table overleaf indicates how the HbSS gene of sickle cell anaemia is inherited
from both parents (Dyson: 2005, pp. 6 and Huntsman: 1987, pp. 7&8).
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Table 1.1 Genetic Breakdown of Sickle Cell Anaemia
Gene inherited from a
carrier father (HbAS)
Gene inherited from a
carrier mother (HbAS)
βA βS
βA AA
Person with the usual
haemoglobin/without the
trait
AS
A carrier of sickle
cell/sickle cell trait
βS AS
A carrier of sickle
cell/sickle cell trait
SS
A person with sickle cell
anaemia
HbAA is said to be the normal haemoglobin
HbAS is a carrier of sickle cell
HbSS is sickle cell anaemia
Table 1.1 shows how the sickle cell anaemia gene can be inherited from the parents.
During reproduction, there is a 50% chance of having an offspring with the HbAS
gene; 25% chance of HbAA gene; and a 25% chance of a couple who both have the
HbAS (carrier of sickle cell) to reproduce an offspring with the HbSS (sickle cell
anaemia) gene.
Sickle cell anaemia screening is done by the health practitioner performing a full
blood count on the patients’ blood. The blood sample taken is tested for the
haemoglobin ‘S’. On the occasion that the blood sample is positive, it is deduced that
the patient does in fact have sickle cell anaemia. Testing in infants has been noted to
be quite crucial. Once the condition has been identified, family members can receive
adequate counselling on caring for the infant and attain an improvement on the
quality of life. This has been found to reduce the mortality rate of infants with sickle
cell anaemia. (Ryan, Bain, Worthington, James, Plews, Mason, & Streetly: 2010;
Yang, Andrews, Peterson, Shah & Cepeda: 2000).
Sickle cell anaemia disease is now widely spread, affecting not only the ‘Black’
populations of Africa America and Caribbean, but Greece, Turkey, Saudi Arabia,
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India, Pakistan, Bangladesh, China and Cyprus nationalities as well (Midence &
Elander: 1994). Having said this, the researcher is passionate about this disease
because she has formed relationships with many people who have sickle cell
anaemia. In certain parts of the world (especially West Africa) some individuals feel
restricted to talk about their condition. With such an attitude, one can only wonder if
there is good, solid quality information about this condition on the internet. As more
individuals are being diagnosed with this condition, it is imperative that the
information supplied by various websites is accurate.
It has been made mention that the World Health Organisation (WHO) has now
recognised sickle cell disease as a major health problem (Midence & Elander :1994).
According to (WHO: 2005), Sickle cell anaemia is a “common genetic condition due
to haemoglobin disorder”. Tsai (2004) states that sickle cell disease is a “family of
blood disorders”. These include sickle cell anaemia (blood composition of HbSS),
sickle cell disease (blood composition of HbSC- a milder form) and βThalassemia
(blood composition of HbβThal). The common ground for all these conditions is that
the red blood cells have the tendency to sickle (form a crescent shape) due to
numerous factors that will be discussed in Chapter Two.
Weaver, Thompson, Weaver & Hopkins (2009) noted that an increasing amount of
individuals have become self- reliant and seek information about medications and
other forms of treatment on the Internet. With this in mind, it is imperative that the
sickle cell anaemia patients have access to quality information on the Internet.
According to Bouchier and Bath (2003), it is important for patients and carers to
have access to quality health-related information via the Internet in order to allow
them to take greater responsibility in healthcare decisions. This could possibly relate
to the fact that the health-related information is the most sought out information on
the Internet (Esyenbach & Kohler: 2003).
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1.3 Research Aims and Objectives
Now that Sickle Cell Anaemia has been defined. It is imperative to outline the aims of
this study. The aim of this study is to evaluate the quality of information for Sickle
Cell Anaemia patients on the web. The evaluation will be conducted by the use of
five data analysis tools namely: HON Code, DISCERN, Flesch Reading Ease and
Flesch-Kincaid Grade Level and Sickle Cell Anaemia tools. This will be discussed
further under ‘Methodology’.
The objectives of this research are:
1. To evaluate quality of Sickle Cell Anaemia websites using generic health
evaluation tools
2. To identify the most accurate websites for Sickle Cell Anaemia patients and
their carers
3. To inspect the proposed evaluation tools for validity, feasibility and reliability in
measuring the quality of information
4. To develop a disease specific tool for the evaluation of Sickle Cell Anaemia
websites based on information derived from the literature.
1.4 Structure of the Dissertation
This study is divided into six sections that are as follows:
Chapter One- Introduction to the research of sickle cell anaemia
Chapter Two- Covers the literature review in terms of sickle anaemia disease
and information provided on the internet; and the importance of quality health
information on the internet
Chapter Three- Highlights the methodology used to carry out the research
Chapter Four- Discusses the results from the analysis of the websites
Chapter Five- Is the discussion if the results in detail with use of various form
of graphs
Chapter Six- The researcher’s conclusions and recommendation of the use of
the analysed websites is presented in this chapter.
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1.5 Summary
With the development of technology, acquiring health-related information has
become an easy feat. It is of the utmost importance that information acquired over
the internet is of the highest standards. As this condition is one that has not been in
the public’s eye in comparison to other medical conditions, patients need to be
aware of the websites that have been proven to deliver reliable, quality information.
Chapter Two discusses the disease at hand and the importance of quality health
information on the internet
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CHAPTER 2: LITERATURE REVIEW
2.1 Introduction
Chapter One provided a brief description of the sickle cell anaemia condition. In
order to appreciate the study further, the researcher conducted a literature review.
This review provides details on the quality of health-related information on the
internet in regards to specific medical conditions and an understanding of the tools
used to analyse the data retrieved from the websites. A brief description on how the
researcher obtained the websites used for the evaluation is outlined in this chapter.
2.2 Sources and Search Strategy
The purpose of the literature review section is to discover studies that have been
conducted on similar topics. The importance of the literature review chapter for this
particular dissertation is for the facilitation on the sickle cell anaemia tool that will be
used for analysing the data that will be retrieved from the websites. This is essential
as the researcher will be aware of the information needs of sickle cell anaemia
patients.
Searchable database of multiple journals can be found on the internet (Hewson,
Yule, Laurent & Vogel: 2003, pp.11). The databases that were utilised during the
months of June and July 2014 are as follows: ScienceDirect, British Medical Journal
(BMJ), Medline, Web of Science and Scopus.
The search phrases below were inputted into the ‘search box’ of each database:
Health information on the internet
Quality of health information on the internet
Quality of information in regards to specific medical conditions on the internet
Importance of quality health information on the internet
Sickle cell anaemia
Sickle cell anaemia patients’ information needs
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2.3 Health Information on the Internet
According to Smith & Koehlmoos (2011) ‘healthcare’ can be defined as “health
knowledge for prevention and treatment of disease rather than routine statistical
data”. It has been noted that patients, health practitioners and health organisations in
some low and middle income countries have insufficient information. The prior said
authors documented that about 80% of children in Africa die before arriving at a
health facility
Dr. Dzenowagis (chief scientist at WHO) had this to say about health-related
websites on the internet- “Some sites are simply dangerous” (Brown: 2002). The
quality of health-related information has been of concern (or interest) for many health
practitioners over the years. The earliest recorded time is the mid- 1990s (Gagliardi
& Jadad: 2002). According to Eysenbach & Diepgen (1998), the term ‘quality’ is
defined as “the totality of characteristics of an entity that bear on its ability to satisfy
stated and implied needs”. The aforementioned authors explained that in order for
quality to be measured, it must be translated into a “set of quantitative or qualitative
stated requirements” that echo the implied needs. It would be ideal to have
standardised medical publications on the internet, though this may be termed as
unrealistic. Therefore, there should be basic method for labelling health related
information on and off the internet.In the UK, the government has ensured that
information on the internet is prime and easily accessible to its users (Eaton: 2002).
2.4 Health Information in Regards to Medical Conditions Many studies have been conducted to gauge the level of quality information for
specific medical conditions. Esquivel, Meric-Bernstam, & Bernstam (2006), found in
their study that about two-thirds of breast cancer patients received false information
from the internet. This research was conducted in order to find out how accurate the
information on the internet about breast cancer is. It was discovered that almost half
of the women who had been diagnosed with breast cancer used the internet as a
means of retrieving information on the disease and ways to keep healthy. Most of the
users for the information adequate and based their decisions on healthcare methods
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on the information they received from the internet. Unfortunately, some of the
patients failed to consult their healthcare practitioners on the treatments they chose
to exercise. With patients making decisions without any initial contact with the
practitioner, clinicians are faced with the task of re-informing patients who have been
misinformed.
Additionally, Griffiths & Christensen (2000) conducted a similar study for depression
related information on the internet. Although the authors did arrive at similar findings-
that the information on the internet in regards to depression may not be accurate to a
certain degree. One may argue that the search engines used (DirectHit and
MetaCrawler) influenced the data.
Reichow, Halpern, Steinhoff, Letsinger, Naples & Volkmar (2012) conducted a study
to discover the quality of information available to parent who have children with
Autism Spectrum Disorder (ASD). This study was executed during the years of 2009
and 2011. The search engines that they used were Google, Bing and Yahoo. They
evaluated the websites by using nine characteristics. The characteristics that were
applied are “attribution; authorship; currency; disclaimer; contact information;
promotion of a non-evidence-based treatment; purpose; commercial product or
service; reading level and top-level domain.” On conclusion on the study, it was
recognized that websites from educational (.edu) and government (.gov) instituitions
had “higher standards when placing information on the internet.” This was argued
that sponsors were very particular about the information and how refined it was
before sharing it on the internet.
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2.5 Information Needs of Sickle Cell Anaemia Patients
As mentioned in the previous chapter, sickle cell anaemia is a genetic disease
(WHO: 2005). For this reason, adults who have the intent of reproducing should go
for sickle cell anaemia trait testing as discussed by (Ryan et al: 2010; Yang et al:
2000).
In reference to the table provided in Chapter One, in the event that both the male
and female counterparts have the trait of sickle cell anaemia, during reproduction,
there is a 50% chance of having an offspring with the HbAS gene; 25% chance of
HbAA gene; and a 25% chance of a couple who both have the HbAS (carrier of
sickle cell) to reproduce an offspring with the HbSS (sickle cell anaemia) gene
(Dyson: 2005, pp. 6 and Huntsman: 1987, pp. 7&8). Therefore, one can argue that
adults who wish to procreate need to be aware of the fact that they may be carriers
of a blood condition. This in turn may have an impact on their decision procreate.
In cases whereby they forge ahead and procreate, and the infant in fact has the
medical condition, they will be able to commence treatment from an early stage.
When a child is at the age of six months; sickle cell anaemia can present itself in
various forms. This includes “fever with anaemia and enlarged spleen;
haematological crises in a grossly pale and breathless baby, with enlarged spleen,
with or without fever; puff mess of some fingers, hands or feet in a pale baby with or
without fever; frank osteomyelitis, sometimes bilateral and symmetrical; jaundice with
anaemia and enlarged liver, with or without fever; merely on a pale baby which is
failing to thrive; a pale and lethargic baby” (Nwokolo: 1960). This information is vital
for parents who both have the trait of the medical condition.
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Figure 2.1 Normal Red Blood Cells vs Sickle Cells
Courtesy of Cleveland Clinic
Figure 2.1 represents the sickle cell process in a patient. Vessels become clogged with the sickle
cells. This process is known as a crises- painful course in the life of the patient.
Sickle cell anaemia patients experience a process known as ‘sickling’ or ‘crises’ as
shown in Figure 2.1. This is quite painful process in the bones and muscles of the
patients. This is due to the blockage a sickle cell presents; causing lack of oxygen to
the parts of the body. Sickling can be related to many instances. A few of them could
be skin cooling; emotional stress; physical exertion; pregnancy; infection;
dehydration; drug-induced metabolic acidosis; high altitude; sleep and sleep apnoea.
Sickle cell anaemia patients need to be knowledgeable about this process. As the
causes vary from individual- to -individual, each patient must be aware of what may
trigger the sickling process in their body (Okpala: 2004 pp.47).
Children with sickle cell anaemia have a higher chance of suffering from frequent
strokes than children with ‘normal blood cells’. Stroke in children has multiple
implications- health wise for the children and financially for their carers (Ware et al:
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2007). In order to prevent strokes in children with sickle cell anaemia parents or
caregivers have to take necessary precautions.
Sickle cell anaemia patients must be advised that even though the consistency in
blood transfusions has been known to curb frequentness of stroke, it has also been
found to produce iron overload in the blood (Inati: 2009, pp. 10). Iron overload is
whereby the iron in the body continuously accumulates. This can cause damage to
the organs (Thuret: 2013).
Hydroxyurea (known in the United Kingdom as hydroxycarbamide) is a drug that has
been developed to control sickle cell crisis. It was developed as a means to avoid
frequent blood transfusions (Ware et al.: 2007). Foetal haemoglobin has been known
to be present during the first five years of a child’s life. Thereafter, it is replaced by
the ‘normal’ haemoglobin. Hydroxycarbamide protects sickle cell patients from
painful crisis by the production of the foetal haemoglobin (HbF). Early use of
hydoxycarbamide can protect the patient from experiencing frequent crises pain and
therefore improve the quality of life (Telfer: 2011).
As the patients progress from childhood to adulthood, the crisis pain is not as
frequent, though they are very much still present. This could be attributed to the fact
that the patient has become accustomed to his/her body and develop patterns of
pain management and response (Midence & Elander: 1994).
The care of patients with ongoing pain could pose to be quite challenging for their
carers. This could be due to the fact that they could become dependent pain
relievers (drugs) (NCEPOD: 2008).
With all of this discussion about sickle cell anaemia, it is apparent the patients
require a number of healthcare needs.
Bradford, Roedl, Christopher & Farrell (2012) noted in their study 38.4% that sickle
cell anaemia patients required informational support for their condition. 9.6% of the
patients required emotional support. Parents and other care-givers used social
network sites as a means to provide emotional support. Tangible aid support and
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esteem support were found to be in the lower percentile. But nonetheless, patients
did require support in these forms.
2.5.1 Sickle Cell Anaemia Websites
This day and age is full of the ever changing technological devices that have easy
access to the internet. Therefore, the amount of readily accessible information is
increasing at an alarming rate (Surman & Bath: 2013). Interestingly enough, Brophy
& Bawden (2005) highlights the fact that search engines such as Google have “made
much information searching quicker and much more efficient”. They have also led to
the belief that all information is to be found there and retrieved “without undue effort”
(page 499). With information at their fingertips, patients are readily willingly to take
the initiative in decisions regarding their own healthcare (Surman & Bath: 2013).
Patients or even their carers may visit health-related websites to retrieve information
or guidance based on symptoms or medical conditions (Shuyler & Knight: 2003 and
Khazaal, Chatton, Cochand, Hoch, Khankarli, Khan & Zullino: 2008). Therefore,
there is an increasing need for websites to “present high quality and accurate
information which may help people to make informed choices about their treatment”
(Khazaal et al: 2012).
When using the internet to retrieve crucial information especially health-related, the
information seeker must consider the author’s credentials, resources or accuracy of
data and the date of the material (Hewson et al.:2003, pp. 12).
Many sickle cell anaemia patients have found hydroxycarbamide to reduce the
frequency and severity of their crisis (Ware, Zimmerman, Sylvestr, Mortier, Davis,
Treem & Schultz: 2004). Patients or carers of sickle cell anaemia patients use these
websites in order to gain certain information. The researcher has view majority of the
websites and has found that majority of people affected or know of someone affected
with the condition question the effectiveness of the drug and the side effects
associated with it and how to deal with them. They visit some of the websites to
discover ways in which they can use home remedies to relieve pain in certain areas
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of the body; the type of support that the patient needs from their family, friends and
colleagues.
The researcher has done extensive literature review on this study. Further research
on the importance of quality health- related information on the Internet is still to be
done. Additionally, the researcher aims to fully understand the mission of the sickle
cell anaemia websites.
2.6 Tools Used In Evaluating the Quality of Health Information
It has been noted that there are a number of tools for examining quality and they
keep increasing as the years progress. An example of investigating the quality of
website is via the quality logo which is usually present on the page by the provider.
The logo is displayed only in a case that the website has satisfactorily met all the
provider’s requirements. Users have the right to report the website to the providers if
they are of the opinion that the site may be misusing the logo (Wilson: 2002).
HON was developed by the UN that aims to ensure that the experiences of online
health information seekers are both efficient and adequate. It was developed in order
to guarantee internet users to be circumspect in regards to the health- related
information they retrieve form the internet. The HON Code is based on property,
intention, authorship, qualification, attribution, interactivity and lastly, updates. The
HON Code will be dissected further in the following chapter (Correa, Ferrari, &
Berretin-Felix: 2013). Hirasawa, Saito, Yachi et al (2012), concluded in their study
about the Mediterranean diet users needed to seek the advice of health practitioners
because information on the internet about the diet was inadequate.
DISCERN is a tool developed to in order to analyse the “quality criteria for consumer
health information” (DISCERN: 2014). DISCERN comprises of sixteen questions that
are divided into three sections. The first eight questions is the first section. This is the
readability part of the analysis. The importance of the readability is that it helps to
examine if the source of the information holds any credit. The second section of the
questionnaire is questions nine to fifteen. These questions deal with the treatment
choices. These choices include active treatment, self-care and in some instances- no
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treatment. The final section is question sixteen that aims to assess the general
quality of the information. The rating of each question is numbered one until five.
Five represents the ‘yes’; one is ‘no’; and two to four represents answers that are
‘partial’.
As per mentioned above, sickle cell anaemia require a great deal of information. The
sickle cell anaemia tool is developed to measure the accuracy of the health- related
information about sickle cell anaemia on the websites. The tool will be used to
acquire the quality of information in view of the following:
The sickle cell disease
How the disease is inherited
The effects of sickle cell anaemia to the body organs (mainly kidneys and
lungs)
Pain management and home remedies
Ways of preventing the spread of the disease
Treatments used to manage the disease
2.7 Summary
There are multiple tools that have been developed in order to analyse the
information quality of health-related websites. For this study, the researcher chose to
utilise the HON Code and the DISCERN tools alongside a generic (disease –
specific) tool. As said earlier on in the chapter, sickle cell disease has become a
widespread disease and those infected and affected by it need to be able to acquire
relevant information. Chapter Three discusses the study’s approach in answering the
question of how reliable (and usable) the information provided by the websites is.
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CHAPTER 3: METHODOLOGY
3.1 Introduction
The literature review revealed some rifts in modern day research. Numerous
researchers have conducted similar studies on diseases that are known quite well.
Nevertheless, sickle cell anaemia has not been amongst them. This chapter aims to
discuss the methods used for this research. Additionally, the tools used will be
reviewed in this chapter.
3.2 Research Approach
Quantitative methodology refers to an “objective, formal systematic process in which
numerical data findings... using a deductive process of knowledge attainment
(Charoenruk: 2008, pg.1). Deductive methodology approach can thus be
summarised as the “reconstruction of theory to create a new one” (Khaiklenga,
Wongwanichb & Suijivac: 2013, pp. 1390). This leans towards the deductive
quantitative methodology research. The researcher is interested in measuring the
features of websites in terms of sickle cell anaemia information and how ‘user-
friendly’ it is. A deductive quantitative methodology was appropriate for this study
due to the fact the researcher was basing her research from ‘the general to the
specific’. The focus of this research was on sickle cell anaemia patients. To get a
better understanding of the study at hand, the researcher looked at similar studies in
which the focal point was other diseases such as stroke and multiple sclerosis and
breast cancer.
One can therefore note that the study aims to encompass a comparison of the
websites in the form of statistical data; whilst with the intention of scrutinising similar
studies, focusing on sickle cell anaemia. It can be then said that this is a deductive
quantitative form of research.
In order to achieve the aims that were outlined in Chapter One, there were certain
steps that the researcher needed to take:
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The first step of the study was to conduct a research on similar studies that
concentrated on different diseases
The second step of the study was to determine the generic tools that would be
used for the research
The third step was to develop the disease specific tool
The fourth step was to select the websites from Google and Yahoo search
engines
The fifth step of the research was the analysis of the data and to provide
future recommendations
3.3 Website Selection Method
The sampling method is a mixture between systematic and convenience. Systematic
sampling is when the researcher selects the units directly from the sampling frame.
Convenience sampling is one that is available to the researcher due to its
accessibility (Bryman: 2001, pp. 20). The reason this study is a mixture of these is
due to the fact that the websites are going to be chosen solely on those that are
displayed on the first ten pages of Google and Yahoo and on the set date that the
data will be collected.
The search engines identified for the use of this study will be Google and Yahoo as
they are the most frequently used search engines (Lawrence & Giles: 1998). The
query term that will be entered into the ‘search box’ is “Sickle Cell Anaemia”. This is
the term likely used by patients (or care givers of the patients) searching for
information or alternatively ‘sickle cell’. The former was used in order to encapsulate
as much website that is related to the disease as possible. The websites will be
chosen from the first five pages of the results page of each of the search engines so
as to make the search as broad as possible. This is also taking into account that
most users acquire information that is present in at least the first two pages (Jansen
& Spink: 2005).
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3.4 Tools for Data Collection
In previous research with similar focus area, the tools that were utilised indicate HON
Code, DISCERN, Flesch Reading Ease and Flesch-Kincaid Grade Level (readability
tests) and a specialised tool created for the specific disease. Therefore, the HON
Code and DISCERN tools will be used in conjunction with the Sickle Cell Anaemia
tool as well as the readability tests. These tools will assist in measuring the
feasibility, validity and reliability of the specified websites.
Health-On-the Net (HON) Foundation has “issued a code of conduct for medical
sites” (Boyer, Selby, Scherrer & Appel: 1998). The code of conduct is outlined below:
Authoritative
Complementarity
Privacy
Attribution
Justifiability
Transparency
Financial disclosure
Advertising policy (Health-On-the Net Foundation)
The DISCERN tool is a questionnaire for patients or their carers (people without
expert knowledge) to asses quality of information about their choice of treatment
(Charnock, Shepperd, Needham & Gann: 1999). In this way, the likelihood of biased
results will be reduced (Griffiths & Christensen: 2002).
The Flesch-Kincaid Grade Level and the Flesch Reading Ease are readability tests
that measure the total words, sentences and syllables. From the calculations, the
scores are used to measure how easy or difficult it is to understand. For example, a
score of 90.0-100.0 is said to be understood by an average 11 year old. A score of
60.0-70.0 should be understood by an individual aged 13-15 years. Lastly, a score of
0.0-30.0 is understood mostly by university graduates (Flesh).
24
The formula for arriving at the final score is Flesch-Kincaid Grade Level
(0.39 × Average Sentence Length) + (11.8 × Average Syllables per Word) - 15.59
The Flesch Reading Ease Score is calculated by using this formula-
206.835 - (1.015 × Average Sentence Length) - 84.6 × Average Syllables per Word.
(Flesh)
The Sickle Cell Anaemia tool that will be used with the other two as mentioned
above will be designed specifically for the medical condition. It will aim to challenge
the information presented about the condition, the authorship and the validity or how
often the website is updated.
During the data analysis process, the researcher intends to rotate the tools for each
website. An example of this is provided in the table below:
Table 3.1 Sequence of Applying Tools
Website
Number
Sequence of tool used
1 HON Code, DISCERN, Sickle Cell Tool (SCA), Readability Tools
2 DISCERN, Sickle Cell Tool (SCA), HON Code, Readability Tools
3 Sickle Cell Tool (SCA), HON Code, DISCERN, Readability Tools
4 HON Code, DISCERN, Sickle Cell Tool (SCA), Readability Tools
5 DISCERN, Sickle Cell Tool (SCA), HON Code, Readability Tools
6 Sickle Cell Tool (SCA), HON Code, DISCERN, Readability Tools
7 And so on…….
Timing is quite crucial in order to analyse the validity, feasibility and reliability of the
tools. Therefore, the researcher timed how long it took to complete each website
using all the tools used.
25
3.5 Search Strategy
The websites that were to be evaluated were retrieved from Google and Yahoo on
the 1st of July and 8th of July 2014 respectively. Internet Explorer was the browser
used on a PC with Windows Visa (10) as its operating system. As cited by Surman
from Nielsen (2010), the most commonly used search engines are Bing, Google and
Yahoo. The researcher decided to use Yahoo and Google search engines as the
researcher has earlier stated; internet searchers would normally stop
at the second page of their search results, Therefore for this study,
information retrieved will be from first 5 pages to broaden the scope
of information the users may likely have accessed. Due to this reason, the
researcher used websites until the fifth page in order to broaden the selection of
websites, ensuring that the websites patients are likely to use would be part of the
study.
3.6 Selection and Application of Tools
In the literature review phase, it was discovered that there are numerous generic
tools that have been developed over the years. The development of these tools has
been attributed to the fact that there has been an increasing demand of the review of
the quality of health related information on the internet. The HON code and
DISCERN tools were chosen for this study.
The fifty websites were each evaluated once by using the generic, readability and
disease specific tools from 20th July to the 28th of July 2014. The sequence in which
the analysis was conducted is represented in Table 3.1.
3.7 Summary
This chapter has highlighted the fact that five two (generic, two readability and one
disease - specific) tools were utilised for this study. The tools all fulfilled a purpose in
this study. The generic tools are used to measure any kind of health- related website
on the internet. The readability tools measure how ‘readable’ a site is and the
minimum grade level needed to comprehend the facts provided. Lastly, the sickle
26
cell anaemia tool was designed particularly to assess sickle cell anaemia websites.
Chapter Four outline the results; whilst Chapter Five depicts the results.
27
CHAPTER 4: RESULTS
4.1 Introduction
The analysis of the fifty websites using the generic, readability and disease specific
tools produced interesting results. This chapter aims to discuss all the results. The
results are represented in graphical and tabular formats. An overall ranking of each
website is provided for the tools. This allows for comparison across the board.
4.2 Description of the websites
Each of the websites was created for a specific purpose. There are certain websites
that provide information, provide support for patients, some are community websites,
other pages are related to certain charities. There are some websites that aim to
provide information and act as a support group for the patients.
Due to the fact that the search engines used are UK based, the websites retrieved
were mostly UK based. Nevertheless, there were a few American websites
represented and one German website.
28
4.3 Results of information quality assessments by each tool
Figure 4.1 Scores for HON Code
The HON code is based on a set eight principles. These principles have been
designed to guide websites on the way they provide health related information on the
internet. Secondly, the HON code can safeguard users of the health related
websites. They have the assurance that the website follows the universally set
guidelines for evaluating information on the internet.
For the creation of the tool, the principles were further divided into specific questions,
which in turn totalled fourteen questions.
For questions eleven and fourteen there is 2% value of a not applicable (n/a) value.
Genetics Home Reference does not associate with any brand names. This is the
reason why it is not applicable for this website. Labtests Online had a not applicable
value because it does not advertise.
1 2 3 4 5 6 7 8 9 10 11 12 13 14
n/a 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 2% 0% 0% 2%
yes 52% 52% 35% 32% 46% 42% 22% 12% 46% 36% 4% 22% 30% 26%
partly yes 6% 22% 18% 4% 32% 36% 8% 30% 8% 10% 12% 30% 20% 16%
partially no 2% 2% 2% 8% 8% 8% 6% 14% 0% 10% 14% 2% 12% 14%
partially 8% 20% 39% 8% 4% 4% 4% 28% 6% 8% 38% 20% 20% 14%
no 32% 4% 6% 48% 10% 10% 60% 16% 40% 36% 30% 26% 18% 28%
0%
20%
40%
60%
80%
100%
120%
n/a
yes
partly yes
partially no
partially
no
29
Figure 4.2 Scores for DISCERN The DISCERN tool is made up of sixteen questions designed assess the quality of
information for a health related problem on the internet.
Q.1 Q.2 Q.3 Q.4 Q.5 Q.6 Q.7 Q.8 Q.9 Q.10 Q.11 Q.12 Q.13 Q.14 Q.15 Q.16
yes 30% 18% 24% 48% 60% 6% 34% 0% 36% 34% 12% 2% 2% 42% 2% 0%
partly yes 48% 62% 46% 0% 4% 48% 18% 8% 14% 10% 8% 2% 12% 10% 2% 30%
partly no 2% 4% 8% 6% 0% 6% 2% 14% 12% 6% 4% 12% 10% 2% 22% 20%
partially 14% 10% 20% 4% 6% 32% 14% 52% 10% 12% 18% 6% 26% 12% 16% 34%
no 6% 6% 2% 42% 30% 8% 32% 26% 28% 38% 58% 78% 50% 34% 58% 16%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
yes
partly yes
partly no
partially
no
30
Figure 4.3 Score for SCA tool
The SCA tool that was designed specifically for this study consisted of twenty-one
questions.
Q.1 Q.2 Q.3 Q.4 Q.5 Q.6 Q.7 Q.8 Q.9Q.1
0Q11
Q.12
Q.13
Q.14
Q.15
Q.16
Q.17
Q.18
Q.19
Q.20
Q.21
yes 80%46%40%48% 0% 14%18% 6% 54%46%20%12%18%12%12% 8% 16%12%12%42%38%
partly yes 10%20% 4% 26% 0% 32%26%14%14%14% 8% 22%16%28% 8% 4% 2% 2% 2% 12% 0%
partly no 2% 14% 0% 4% 10%10% 8% 18%10% 8% 2% 18%14%12%12%12% 2% 4% 10% 2% 0%
partially 6% 14% 6% 14% 2% 22%24%34%14% 8% 22%32%24%10% 8% 8% 6% 0% 2% 14% 2%
no 2% 6% 50% 8% 88%22%24%28% 8% 24%48%16%28%38%60%68%74%82%74%30%60%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
yes
partly yes
partly no
partially
no
31
Figure 4.4 Score Distribution for Evaluation Tools
This graph shows how the overall score distribution of all the fity websites for the
HON code, DISCERN and Sickle Cell Anaemia (SCA) tools. Majority of the websites
scored between 50% - 74% followed closely by the 75% and above category. The
score distribution of 25% - 49% recorded that the HON code had eleven websites;
sixteen webistes have been noted for the DISCERN tool and lastly eighteen of the
websites are for the SCA tool. In the 24% and less category, there was only one
website recorded. BBC had the lowet score for the DISCERN tool
0
5
10
15
20
25
30
24% andless
25%-49% 50%-74% 75% andabove
11
25
19
1
16
22
10
18
27
5
Nu
mb
er
of
we
bsi
tes
Score distribution
HON
DISCERN
SCA
32
Figure 4.5 Results of information quality using the evaluation tools (Sites 1-19)
Figure 4.6 Results of information quality using the evaluation tools (Sites 20-38)
0
10
20
30
40
50
60
70
80
90
100
Site1
site2
Site3
Site4
Site5
Site6
Site7
Site8
Site9
Site10
Site11
Site12
Site13
Site14
Site15
Site16
Site17
Site18
Site19
HON 95 87 68 45 50 57 51 65 50 88 88 85 45 35 47 31 78 65 47
DISCERN 66 81 70 46 78 68 67 52 30 83 78 75 21 50 70 33 76 50 48
SCA 80 69 71 47 79 68 81 37 46 61 74 70 27 51 53 41 70 60 49
HON
DISCERN
SCA
0
20
40
60
80
100
Site20
Site21
Site22
Site23
Site24
Site25
Site26
Site27
Site28
Site29
Site30
Site31
Site32
Site33
Site34
Site35
Site36
Site37
Site38
HON 48 41 87 81 71 65 31 78 82 77 72 71 77 67 87 72 50 64 70
DISCERN 40 31 37 60 82 48 55 75 57 46 31 76 76 60 83 71 65 48 55
SCA 37 34 50 40 62 71 48 48 46 31 43 76 66 46 77 60 57 65 66
HON
DISCERN
SCA
33
Figure 4.7 Results of information quality using the evaluation tools (Sites 39-50)
4.4 Readability Scores
As discussed in the earlier chapters, the readability tools of Flesch Reading Ease
(FRE) and Flesch- Kincaid Grade Level (FKGL) aim to analyse how simple a
document is to read and understand. For FRE the higher the percentage is, the more
it can be said to be understood by readers.
0
10
20
30
40
50
60
70
80
Site39
Site40
Site41
Site42
Site43
Site44
Site45
Site46
Site47
Site48
Site49
Site50
HON 68 58 62 51 55 78 58 74 74 72 45 40
DISCERN 47 70 65 71 48 72 37 43 62 65 52 31
SCA 41 52 54 60 55 62 45 27 55 52 60 39
HON
DISCERN
SCA
34
Figure 4.8 Flesch Reading Ease Score Distribution
A little over half of the websites fall under the 40-49.9 category. This can be
interpreted that the websites are fairly simple to understand. Two of the websites
(4% of the total number of websites) can be detected to be in the highest category of
this study and that is in the 70-79.9 category. These websites are Baby Centre and
Web MD. OMIM scored the lowest in the FRE analysis test.
Figure 4.9 Flescch- Kincaid Grade Level Score Distribution
In the FKGL analysis majority of the sites have been discovered to be in the the 10-
11.9. Only one website has been documented to be in the highest category of this
study. OMIM has the highest grade level score. This represents the readability
difficulty and suggests that the readers must have a high grade level (tertiary
0
5
10
15
20
25
30
10-19.9 20-29.9 30-39.9 40-49.9 50-59.9 60-69.9 70-79.9
2
12
20
26 24
12
4
Pe
rce
nta
ge o
f w
eb
site
s
Flesch Reading Ease
0
5
10
15
20
25
30
35
6-7.9 8-9.9 10-11.9 12-13.9 14-15.9 16-17.9
10
26
32
18
12
2 Pe
rce
nta
ge o
f w
eb
site
s
Flesch-Kincaid Grade Level
35
education) in order to be able to understand the health –related information provided
by the websites.
36
Table 4.1 RANKING OF EACH TOOL TABLE
Overall
Rank Site Name
HON
Rank
DISCERN
Rank
SCA Tool
Rank
FRE
Rank
FKGL
Rank
1 Mayo Clinic 4 (87.1) 1 (83.8) 4 (77.1) 19 (53.2) 37 (9.4)
2 Medicinet 1 (95.7) 20 (66.3) 2 (80.9) 29 (45.3) 22 (10.8)
3 Baby Centre 2 (88.5) 5 (78.8) 6 (74.3) 2 (70.2) 49 (6.9)
4 Teenshealth 4 (87.1) 4 (81.3) 11 (69.5) 21 (49.7) 17 (11.4)
5 Patient 2 (88.5) 1 (83.8) 18 (61.9) 49 (20.9) 3 (14.5)
6 Web MD 7 (85.7) 10 (75) 9 (70.5) 1 (77.3) 50 (6)
7 Truth in Science 11 (78.5) 7 (76.3) 9 (70.5) 40 (31.4) 5 (14.3)
8 NY Times 20 (71.4) 7 (76.3) 5 (76.2) 30 (45.2) 27 (10.5)
9 Answers 13 (77.1) 7 (76.3) 13 (66.7) 44 (28.2) 6 (14.2)
10 Emedicine 20 (71.4) 3 (82.5) 16 (62.9) 48 (22.4) 8 (13.9)
11 Pysio-pedia 11 (78.5) 12 (72.5) 16 (62.9) 35 (38.3) 16 (12.1)
12 Bupa 23 (68.6) 15 (70) 7 (71.4) 13 (57.4) 34 (9.6)
13 NHS 37 (50) 5 (78.8) 3 (79) 28 (45.4) 19 (11.1)
14 UMM 19 (72.8) 13 (71.3) 21 (60) 26 (47) 36 (9.5)
15 Healthline 10 (78.6) 10 (75) 33 (48.6) 12 (58.7) 46 (7.7)
16 NHLBI 35 (51.4) 19 (67.5) 1 (81.9) 6 (61.7 44 (8)
17 Wikipedia 33 (57.1) 18 (68.8) 12 (68.6) 43 (30.1) 3 (14.5)
18 Health Grades 15 (74.3) 24 (62.5) 24 (55.2) 31 (43.9) 23 (10.7)
19 Hematology 22 (70) 28 (55) 13 (66.7) 32 (41.1) 13 (12.7)
20 RSNA 17 (72.9) 21 (65) 29 (52.3) 45 (27.9) 10 (13.5)
21 Boots 8 (82.9) 27 (57.5) 36 (46.7) 15(55.6) 38 (9.2)
22 Scinfo 26 (65.7) 34 (48.8) 7 (71.4) 4 (64) 47 (7.6)
23 Social Styrelsen 35 (51.4) 13 (71.3) 19 (61) 37 (36.8) 14 (12.4)
24 Nursing Times 30 (62.3) 21 (65) 26 (54.3) 25 (47.2) 21 (11)
25 Radiopedia 9 (81.4) 25 (60) 43 (40) 47 (23.5) 9 (13.7)
26 Right Diagnosis 31 (58.6) 15 (70) 28 (52.4) 32 (41.1) 32 (10)
27 Wep Sickle Cell 29 (64.3) 34 (48.8) 15 (65.7) 8 (60.2) 44 (8)
28 Medic 8 26 (65.7) 32 (50) 19 (61) 9 (59.8) 43 (8.3)
29 OMIM 4 (87.1) 43 (37.5) 31 (50.5) 50 (16.2) 1 (16.8)
37
30 Labtests online 25 (67.1) 25 (60) 36 (46.7) 20 (52.7) 30 (10.4)
31 CNN 37 (50) 21 (65) 23 (57.1) 16 (53.8) 39 (8.9)
32
Clinical Knowledge
Summaries 41 (47.1) 15 (70) 274 (53.3) 22 (49.2) 27 (10.5)
33 UK Essays 34 (55.7) 34 (48.8) 24 (55.2) 26 (47) 25 (10.6)
34 CDC 23 (68.6) 38 (47.5) 41 (41.9) 7 (61.4) 33 (9.7)
34 FAQs 43 (45.7) 30 (52.5) 21 (60) 38 (34.7) 15 (12.3)
36
Genetics Home
Reference 26 (65.7) 30 (52.5) 45 (37.1) 34 (39) 17 (11.4)
37 Sickle Cell Anaemia 13 (77.1) 39 (46.3) 48 (31.4) 42 (30.6) 7 (14.1)
38 Cleveland Clinic 17 (72.9) 46 (31.3) 40 (43.8) 11 (59) 42 (8.6)
39 Gp Notebook 15 (74.3) 41 (43.8) 49 (27.6) 35 (38.3) 19 (11.1)
40 SCYSS 41 (47.1) 34 (48.8) 32 (49.5) 5 (61.9) 40 (8.7)
41 Genetics Education 31 (58.6) 43 (37.5) 39 (45.7) 39 (32.4) 11 (13.2)
42 Public Health England 43 (45.7) 39 (46.3) 35 (47.6) 10 (59.3) 40 (8.7)
43 Learn Genetics 47 (35.7) 32 (50) 30 (51.4) 14 (56.5) 34 (9.6)
44 Answers for Healing 49 (31.4) 28 (55) 33 (48.6) 23 (48.2) 23 (10.7)
45 RCOG 37 (50) 49 (30) 36 (46.7) 46 (25.1) 2 (15.1)
46 WHO 40 (48.6) 42 (40) 45 (37.1) 40 (31.6) 12 (13)
47 Blood 47 (40) 46 (31.3) 44 (39) 17 (53.6) 31 (10.2)
48 ACLT 49 (31.4) 45 (33.6) 41 (41.9) 18 (53.5) 25 (10.6)
48 Science Museum 46 (41.4) 46 (31.3) 47 (34.3) 24 (48.1) 27 (10.5)
50 BBC 43 (45.7) 50 (21.3) 49 (27.6) 3 (68.9) 48 (7.3)
38
4.5 Histogram Graphs
Figure 4.10 HON Code Percentage Distribution
The histogram graph above shows that the HON Code is not normally distributed.
The results are skewed to the right. This implies that the graph is negatively skewed.
39
Figure 4.11 DISCERN Tool Percentage Distribution
The DISCERN tool histogram graph is also not normally distributed. The skewness
to the right shows that it is negatively distributed.
40
Figure 4.12 Sickle Cell Anaemia Tool Percentage Distribution
The SCA tool percentage total is not normally distributed. As seen above, the graph
is skewed to the right, thus making it negative.
41
Figure 4.13 Flesch Reading Ease Distribution
The FRE readability test shows that the FRE is not normally distributed. The graph
shows negative skewness to the right.
42
Figure 4.14 Flesch-Kincaid Grade Level Distribution
The graph above shows that the FKGL readability test is normally distributed.
43
4.6 Reliability, Feasibility and Validity of Tools
Table 4.2 Standard Deviation of Time Taken for the Evaluation Tools
HON Time
DISCERN
Time SCA TOOL Time
N 50 50 50
Maximum 21 18 16
Minimum 14 14 12
Mean 17:32 16:24 14:16
Std.
Deviation 1:31 1:14 1:00
On average, the SCA Tool tool took the shortest amount of time to evaluate the fifty
websites with a of 14:16. On the other hand, the HON Code used up the longest
amount of time at 17:32. Whilst the DISCERN tool had an average time of 16:24.
Table 4.3 Kruskall Wallis test results determining the difference between the mean times taken to assess the websites
Statistic
Bootstrapa
Bias
Std.
Error
95% Confidence
Interval
Lower Upper
N Valid HON
Time 50 0 0 50 50
DIS Time 50 0 0 50 50
SCA
Time 50 0 0 50 50
Missing HON
Time 0 0 0 0 0
DIS Time 0 0 0 0 0
SCA
Time 0 0 0 0 0
Mean HON
Time 17.32 -.01 .19 17.32 18.08
DIS Time 16.24 .00 .16 16.32 16.54
44
SCA
Time 14.16 -.01 .13 13.48 14.02
Median HON
Time 17.00 .02 .13 17.00 17.50
DIS Time 16.00 .38 .46 16.00 17.00
SCA
Time 14.00 -.05 .20 13.00 14.00
Minimum HON
Time 14
DIS Time 14
SCA
Time 12
Maximum HON
Time 21
DIS Time 18
SCA
Time 16
a. Unless otherwise noted, bootstrap results are based on 1000 bootstrap
samples
From the table above, it is evedence that the HON time has a 95% confidence of
being greater than the DISCERN and SCA tools’ times. Whilst the SCA tool has a
95% confidence of being significantly lower than the DISCERN time.
Table 4.4 Cronbach’s Alpha Coefficient for Evaluation Tools
Evaluation Tools Cronbach’s Alpha
Coefficient
Number of Questions
HON Code 0.969 14
DISCERN 0.988 16
SCA 0.999 21
According to Bryman & Cramer (1997), the results in Conbah’s alpha test ranges
between zero and one. The closer the result is to one, the more ‘reliable’ it is.
Results of 0.8 and above are the best in determining the internal reliability of the
specific tool.
45
Kendall Coefficient of concordance (W)
Table 4.5 Evaluation Tools (except readability tools)
Ranks
Mean
Rank
HON Total
score 1.62
DIS Total
Score 1.74
SCA Tool
Total score 2.64
Table 4.6 All Tools Used
Ranks
Mean
Rank
HON Total
score 3.10
DIS Total
Score 3.28
SCA Tool
Total score 4.37
FRE 3.22
FKGL 1.03
Tbles 4.5 and 4.6 represent the Kendall coeffiecient of concordance. Table 4.5
recorded the evaluation tools except for the readability tools. Table 4.6 recorded all
the tools that were used in this study. As seen, the Kendall’s value is 0.317 for the
three evaluation tools and 0.593 for all the tools. The closer the value is to 1.00, the
more significant they are said to be. Table 4.6 has a Kendall value that is closer to
1.00 in comparison to that of table 4.5.
Test Statistics
N 50
Kendall's
Wa .317
Chi-Square 31.714
df 2
Asymp.
Sig. .000
a. Kendall's
Coefficient of
Concordance
Test Statistics
N 50
Kendall's
Wa .593
Chi-Square 118.604
df 4
Asymp.
Sig. .000
a. Kendall's
Coefficient of
Concordance
46
Table 4.7 Pearson’s Correlation Coefficient Results
HON Total %
DIS Total %
SCA Total % FRE FKGL
HON Total %
Pearson Correlation
1 .497** .342* -.156 .091
Sig. (2-tailed) .000 .015 .279 .528
N 50 50 50 50 50
DIS Total %
Pearson Correlation
.497** 1 .719** -.088 .012
Sig. (2-tailed) .000 .000 .545 .932
N 50 50 50 50 50
SCA Total %
Pearson Correlation
.342* .719** 1 .147 -.044
Sig. (2-tailed) .015 .000 .308 .764
N 50 50 50 50 50
FRE Pearson Correlation
-.156 -.088 .147 1 -.512**
Sig. (2-tailed) .279 .545 .308 .000
N 50 50 50 50 50
FKGL Pearson Correlation
.091 .012 -.044 -.512** 1
Sig. (2-tailed) .528 .932 .764 .000
N 50 50 50 50 50
**. Correlation is significant at the 0.01 level (2-tailed). *. Correlation is significant at the 0.05 level (2-tailed).
47
Table 4.8 Spearman’s Correlation Coefficient Results
HON Total %
DIS Total %
SCA Total % FRE FKGL
Spearman's rho
HON Total %
Correlation Coefficient
1.000 .507** .342* -.197 .133
Sig. (2-tailed) . .000 .015 .169 .356
N 50 50 50 50 50
DIS Total % Correlation Coefficient
.507** 1.000 .737** -.120 .062
Sig. (2-tailed) .000 . .000 .405 .668
N 50 50 50 50 50
SCA Total %
Correlation Coefficient
.342* .737** 1.000 .121 -.063
Sig. (2-tailed) .015 .000 . .404 .665
N 50 50 50 50 50
FRE Correlation Coefficient
-.197 -.120 .121 1.000 -.832**
Sig. (2-tailed) .169 .405 .404 . .000
N 50 50 50 50 50
FKGL Correlation Coefficient
.133 .062 -.063 -.832** 1.000
Sig. (2-tailed) .356 .668 .665 .000 .
N 50 50 50 50 50
**. Correlation is significant at the 0.01 level (2-tailed). *. Correlation is significant at the 0.05 level (2-tailed).
The tables 4.5 and 4.6 above represent the correlation between all the evaluation and readability
tools. The correlations consists of positive and negative values. In the cases whereby the values are
negative, the lower the score the more desirable the results are said to be. Whereas in the case of
the positive values, the higher the score is the more it is desirable.The highest correlation values
are between the DISCERN and Sickle Cell Anaemia tools. The values recorded are 0.719 and
0.737 for Pearson and Spearman respectively. The lowest correlation is between DISCERN and
Flesch-Kincaid Grade Level tools. Their reading fell at 0.012 for Pearson and 0.062 for Spearman.
The correlation between the pairs HON and FRE; DISCERN and FRE; SCA and FKGL and lastly
FRE and FKGL all have negative values and are therefore negatively correlated.
4.7 Summary
This chapter presented the findings after evaluating the fifty websites using the generic, disease
specif and eadability tools. The graphs and tables that were displayed in this chapter represented
the score disribution for each of the tools. The histogram graphs were essential in order to discover
thr frequency distribution of the tools. The time taken to evaluate each website using the evaluation
tools were taken and analysed for their reliability, feasibility and validity. To distinguish how each of
the tool correlated with the other tools, Pearson and Spearman’s correlation was carried out.
49
CHAPTER 5 DISCUSSION
5. 1 Introduction
This chapter is aimed at analysing the results presented in the previous chapter. The purpose is to
discover which evaluation tool is the most useful and accurate for this study. The accuracy of each
tool can be noted through the feasibility, validity and reliability of each tool. These three points can
be assessed by the amount of time it took to assess each website, and a comparison of this study’s
Cronbach’s alpha results to that of similar studies done in the past.
5.2 Information of the Quality of Information
As seen from the results provided in Chapter 4, information on the internet in regards to the quality
for sickle cell anaemia patients is fairly accurate. In looking at the three evaluation tools (HON code,
DISCERN and SCA) majority of the websites fell between the 50% - 74% with a total of 25, 22 and
27 respectively. The other divisions of 24% - 49% and 75% and above received scores of 11; 16
and 18, and 19; 10 and 5 respectively.
The highest recorded website was Medicinet with a HON total score of 95%. BBC’s score for the
DISCERN tool was placed in the lowest category and additionally had the lowest totalled score.
In regards to the readability of the websites by using the FRE test, 26% was recorded in the 40% -
49.9%. This is the highest figure for all seven categories. OMIM had the lowest score with 16%. The
two websites that were logged in the 70% - 79.9% were Baby Centre and Web MD.
The FRE readability test shows how the information on the websites are easy to read. The flow,
length and vocabulary of the sentences were analysed. As mentioned previously, the FRE
readability test captured in order to judge how clear the text is.
The FRE is used in conjunction with the Flesch-Kincaid Grade Level (FKGL). Unlike the FRE the
FKGL measures the required grade level of the reader in order for the provided information to be
understood.
In view of the results provided in Chapter 4, OMIM received the highest FKGL score at 16.8. The
interpretation of these results in the case of OMIM can be said that the reader of the information
provided on that website needs to possess a tertiary grade level education in order for the apt
understanding to be met.
50
5.3 Appraisal of Evaluation Tools
The time it took to evaluate all the websites had the highest time of 21 minutes this was the
Teenshealth website. It was noted that the HON code used more time in comparison to the other
two evaluation tools. On average the HON code took 17:32. The DISCERN tool took the second
longest with an average time of 16:24. SCA tool had the shortest time average of 14:16.
One may argue that the amount of question for each tool may have an impact on the length of time.
In this study, despite the fact that the HON code had the fewest questions and SCA tool had the
most, it may have been expected that the HON code would in fact have taken the shortest amount
of time. A reason for the difference in time could be the difference of the length of the websites.
Some of the websites contained two or three paragraphs of information whilst others had nearly six
pages. Mayo Clinic had the first position in the overall ranking and had the top ten positions for the
evaluation tools.
5.3.1 Reliability of Evaluation Tools Table 5.1 Results of Cronbach’s Alpha Test for the Current and Previous Studies
Evaluation
Tools
Ademiluyi
et al (2003)
Harland &
Bath (2007)
Hsu (2006) Surman
(2010)
This Study
(2014)
HON Code n/a 0.537 0.817 0.860 0.969
DISCERN 0.777 n/a 0.816 0.915 0.988
Multiple
Sclerosis Tool
n/a 0.930 n/a n/a n/a
Breast
Cancer Tool
n/a n/a 0.876 n/a n/a
Stroke Tool n/a n/a n/a 0.922 n/a
SCA n/a n/a n/a n/a 0.999
Table 5.1 displays the Cronbach’s alpha result for the current study as well as previous studies in
the health informatics line. By comparing the Cronbach’s alpha result of this study to the other four
studies, one can determine how reliable the tools (or websites) are. For example, comparing this
study’s DISCERN tool result with that of Ademiluyi’s et al (2003), one can denote that a possibility
for the vast difference in results could be the fact that these studies were conducted eleven years
apart. This phenomenon is divided in two parts. Firstly, the DISCERN tool could have been modified
during the years that two studies were conducted. Secondly, due to the continuous research that is
51
taking place, there could be a possibility that the information on the internet could have been
updated.
5.3.2 Correlation of Evaluation Tools
Correlation measures the differences between two variables. Researchers are interested in
scenarios whereby a variable is changed in a negative or positive manner, the second variable will
wither change positively or negatively. In such a case whereby the first variable has a positive
value, if it is ti be changed positively and the secon value still has a positive value- they are said to
be positively correlated. Whereas, the first variable has a positive value and a positive change
brings about a negative value for the second variable- they are known to be negatively correlated
(Foster, Barkus & Yavorsky: 2006).
In applying this concept to this study, tables 4.7 and 7.8 represent the Pearson and Spearman’s
results respectively. In past studies of a similar nature, the highest correlation has been between the
HON Code and the DISCERN tool. This study shows that the highest correlation is rather between
the DISCERN and SCA tools. The correlation between the two tools is significant at the 0.01 level.
The same software was used to test both the FRE and the FKGL for their readabilities. Though they
are negatively correlated, the two readability tools can be seen as being significantly correlated. The
lowest correlation amongst the tools were beween the DISCERN tool and the FKGL at 0.12 and
0.062 for the Pearson and Spearman correlations respectively.
5.4 Summary
On completion of the analysis of websites as well as the evaluation tools, multiple points for
discussion arose. Firstly, it is evident that over 50% of the websites that were evaluated achieved
an overall score of over 50%. This notifies one that majority of the websites do contain information
that can be of high quality and value to the readers. Nevertheless, despite the fact that the websites
contain information of good quality, they do not adhere to the stated maximum grade level of 6.0.
10% of the websites had a grade level score of 6.0 – 7.9. in measuring the quality of information
plus the readability of the websites, this score is not acceptable.
Secondly, it was found that majority (over 50%) of the websites overlook a crucial point in providing
quality information to their readers. Though treatment methods were stated, information on the
impact of not choosing treatments were disregarded. Additionally, majority of the websites
neglected to discuss the role good nutrition plays on controlling sickle cell anemia. The signficance
of having a good support structure for the patients was ommitted in the discussion of the disease.
52
Lastly, the researcher had vast knowledge of sickle cell anaemia, which probably had an impact
when using the disease – specific tool. Nevertheless, the evaluation tools have proven to be reliable
for this study though further tests can be conducted using the tools. The correlation between the
tools that reflect the highest values are the DISCERN and SCA tools. They had the highest
significant correlation value.
.
53
CHAPTER 6 CONCLUSIONS
6.1 Introduction
In Chapter Five, the results from the analysis of the websites were discussed. Certain points that
were worth considering were mentioned in that chapter. It is imperative to state that this study
yielded results that in some ways are similar to that of previous studies. In aiming to achieve the
objectives, there were limitations. In order to BENEFIT future studies, the limitations and
recommendations are discussed in this chapter.
6.2 Key Findings: Quality of Information on Websites for Sickle Cell Anaemia Patients This study has shed some light on how reliable sickle cell anaemia websites are. Additionally, the
tools that were used can be questioned on how viable they were for this study. The results showed
that there are some websites that are of more superior quality than others. The websites contain
information that could be useful to users. Users are advised to use the information provided by the
websites with caution. Health professionals are to be consulted before any action is taken.
Though the websites contain valid quality information, the readability tests results prove that
majority of the evaluated websites did not meet the maximum grade level score of 6.0. Comparing
this study’s readability results with that of other studies shows that the problem of information giving
health related websites do not comply with the required maximum grade level score.
Lastly, the websites provide information on certain aspects of the disease for example, how it is
inherited, how the disease is diagnosed and treatment methods available to those affected by the
disease. Unfortunately, the websites do not provide information in ways the patient can cope with
the illness on an emotional level. Additionally, the websites do not contain information aimed at
family members or carers of patients with sickle cell anaemia.
6.3 Achievements of Aims and Objectives
The research aims and objectives that were laid out in Chapter 1 (section 1.3) have been achieved.
This research can therefore be considered to be a success. The development of the sickle cell
anaemia tool was useful in determining how reliable the sample of websites is. The tool performed
its function and can be used for future research with modifications applied to it.
54
The top ten and bottom ten websites have been provided in order to fulfil part of the aims and
objectives that were outlined. Patients, their families or carers may require such information so they
can decide which website will provide the most accurate information related to sickle cell anaemia.
The generic, readability and disease specific tools that were used have been analysed for their
validity, reliability and feasibility.
6.4 Contribution of this Study
This study is quite similar to those done in the past on the evaluation of health-related information
on the internet, to ensure that patients are receiving the appropriate health care needs. This study
has proven that though the information that is provided by most websites may be deemed to be of
good ‘quality’ based on the contents. Nevertheless, their readability tests scores show that there is a
possibility that users do not understand. This is due to the use of heavy jargon.
There have been numerous research conducted on treatments of sickle cell anaemia and ways in
which the condition can be eliminated/cured, but unfortunately research has not been done on the
information provided by websites. This study evaluated a total of fifty websites from the Google and
Yahoo search engines. This study has contributed to future research by the fact that a tool has been
developed to evaluate information provided by sickle cell anaemia websites.
6.5 Limitations of study
Google and Yahoo search engines were used. If Bing (another search engine) was incorporated
into the study, the sample size would be wider. Having a wider sample size would enable more
concrete conclusions to be made about the websites as well as the tools.
As the study was conducted in the English language, one cannot compare results in different
languages. The comparison may be of concern to users in which English is not their first or second
language.
The domain that was used for the search engines was UK based. Having used the worldwide
domain would have perhaps yielded a variety of international websites that could have been used
for evaluating. Unfortunately, as the UK domain was used in this study, the information provided
may seem to be more applicable to users who live in the UK as they may be the ones to access the
websites.
As mentioned in the previous chapter, the researcher is accustomed to the sickle cell disease. In
being familiar with this condition could have had an impact on the way the sickle cell anaemia tool
was applied for this study. In looking at the time spent analysing the websites, it was expected for
55
the HON Code to use the least amount of time followed closely by the DISCERN tool. This is in part
because of the amount of questions that was posed.
6.6 Recommendations for Future Research
For future research, it would be advisable that a team of three researchers evaluate the websites.
Having more than one researcher evaluating the websites may reduce the bias that is bound to be
present in a scenario whereby there is only one researcher at that time. As each person may have
different findings, it provides more room for assumptions and conclusions.
In order for science to have a positive impact on the health related information on the internet,
healthcare workers or professionals with health background should be required to evaluate the
websites that provide information on medical conditions. Since these professionals have health
background and may be in daily contact with such patients, they will have the knowledge of the type
of information they and their families/carers need.
This study focused solely on the information supplied by the website provider. In future research,
analysis should be undertaken on how user – friendly the websites are. Acquiring information would
be made easier and more effective if they were separated for each possible user. For example,
patients, families, carers and employers should have their own dashboard. Further research should
be undertaken to assure that each user obtains the relevant information based on the relationship
they have with the user.
6.7 Summary
This study has been successful in that it achieved all its aims and objectives. This study has made
an impact to future research in the development of tool used in specifically analysing sickle cell
anaemia websites. As information that is presented on the internet is continuously updated;
researchers may find themselves frequently evaluating websites. Nevertheless, this study has shed
some light on the quality of sickle cell anaemia websites, their reliability, and steps that need to be
taken in order to make them even more usable for their intended audience.
WORD COUNT: 10 103
56
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APPENDICES
Appendix 1: List of Websites
GOOGLE, 1st July 2014
WEBSITE URL LINK
1. Medicinet http://www.medicinenet.com/sickle_cell/article.htm
2. Teenshealth http://kidshealth.org/teen/diseases_conditions/blood/sickle_cell_anem
ia.html
3. Bupa http://www.bupa.co.uk/individuals/health-
information/directory/s/sickle-cell-anaemia
4. Public Health England
http://sct.screening.nhs.uk/cms.php?folder=2468
5. NHS http://www.nhs.uk/conditions/sickle-cell-
anaemia/Pages/Introduction.aspx
6. Wikipedia http://en.wikipedia.org/wiki/Sickle-cell_disease
7. NHLBI http://www.nhlbi.nih.gov/health/health-topics/topics/sca/
8. Genetics Home Reference
http://ghr.nlm.nih.gov/condition/sickle-cell-disease
9. RCOG http://www.rcog.org.uk/womens-health/clinical-guidance/sickle-cell-
disease-pregnancy-management-green-top-61
10. Patient http://www.patient.co.uk/doctor/sickle-cell-disease-and-sickle-cell-
anaemia-pro
11. Baby Centre http://www.babycentre.co.uk/a558112/sickle-cell-disease
12. Web MD http://www.webmd.com/a-to-z-guides/sickle-cell-disease-topic-
overview
13. BBC http://www.bbc.co.uk/schools/gcsebitesize/science/edexcel/classificat
ion_inheritance/genesandinheritancerev5.shtml
14. Learn Genetics
http://learn.genetics.utah.edu/content/disorders/singlegene/sicklecell/
15. Clinical Knowledge Summaries
http://cks.nice.org.uk/sickle-cell-disease
16. ACLT http://www.aclt.org/index.php/info/showitem/204
17. Truth in Science
http://www.truthinscience.org.uk/tis2/index.php/evidence-for-
evolution-mainmenu-65/142-sickle-cell-anaemia.html
18. Medic 8 http://www.medic8.com/blood-disorders/sickle-cell-anaemia.htm
19. SCYSS http://www.scyss.org/guidance/what-is-sickle-cell-anaemia/
20. WHO http://www.who.int/mediacentre/factsheets/fs308/en/
21. Science Museum
http://www.sciencemuseum.org.uk/whoami/findoutmore/yourgenes/w
hatcausesgeneticconditions/whatisrecessiveinheritance/whatissickle-
celldisease.aspx
22. OMIM http://www.omim.org/entry/603903
23. Radiopedia http://radiopaedia.org/articles/sickle-cell-disease
24. Emedicine http://emedicine.medscape.com/article/205926-overview
25. Scinfo https://scinfo.org/sickle-cell-disease
62
YAHOO, 8th July 2014
26. Answers for Healing
http://www.answersforhealing.com/sicklecell.shtml
27. Healthline http://www.healthline.com/health/sickle-cell-anemia#Overview1
28. Boots http://www.webmd.boots.com/a-to-z-guides/sickle-cell-anaemia
29. Sickle Cell Anaemia
http://www.sicklecellanaemia.org/
30. Cleveland Clinic
http://my.clevelandclinic.org/disorders/Sickle_Cell_Anemia/hic_Sickle_Cell_Anemia.
aspx
31. NY Times http://www.nytimes.com/health/guides/disease/sickle-cell-anemia/treatment.html
32. Answers http://www.answers.com/topic/sickle-cell-anaemia
33. Labtests online
http://www.labtestsonline.org.uk/understanding/conditions/sickle
34. Mayo Clinic http://www.mayoclinic.org/diseases-conditions/sickle-cell-
anemia/basics/definition/con-20019348
35. UMM http://umm.edu/health/medical/ency/articles/sickle-cell-anemia
36. CNN http://edition.cnn.com/HEALTH/library/sickle-cell-anemia/DS00324.html
37. Wep Sickle Cell
http://www.wepsicklecell.org/about/
38. Hematology http://hematology.org/Patients/Anemia/Sickle-Cell.aspx
39. CDC http://www.cdc.gov/ncbddd/sicklecell/traits.html
40. Right Diagnosis
http://www.rightdiagnosis.com/s/sickle_cell_anemia/intro.htm
41. Nursing Times http://www.nursingtimes.net/nursing-practice/clinical-zones/public-health/sickle-cell-
anaemia-causes-signs-symptoms-and-treatment/205485.article
42. Social Styrelsen
http://www.socialstyrelsen.se/rarediseases/sicklecellanaemia
43. UK Essays http://www.ukessays.com/essays/health/sickle-cell-anemia.php
44. Physio-Pedia http://www.physio-pedia.com/Sickle_Cell_Anemia
45. Genetics Education
http://www.geneticseducation.nhs.uk/genetic-conditions-54/708-sickle-cell-anaemia-
new
46. GP Notebook http://www.gpnotebook.co.uk/simplepage.cfm?ID=1087373317
47. Health Grades http://www.healthgrades.com/conditions/sickle-cell-anemia
48. RSNA http://pubs.rsna.org/doi/full/10.1148/radiographics.21.4.g01jl23971
49. FAQs http://www.faqs.org/health/topics/80/Sickle-cell-anemia.html
50. Blood http://www.blood.co.uk/resources/leaflets/sickle-cell/
63
Appendix 2: Evaluation Tools Appendix 2.1 HON Code Site Checker (Modified Version) Principle 1: Information must be authoritative
ID Criterion NO PARTIALLY YES
1. Are the author(s)/editor(s) credentials
provided?
1 2 3 4 5
Principle 2: Purpose of the website
ID Criterion NO PARTIALLY YES
2. Is the purpose of the website stated? 1 2 3 4 5
3. Is the intended audience stated? 1 2 3 4 5
4. Is this statement provided: “The
information provided is designed to
complement, not replace, the relationship
between a patient and his/her own
physician”?
1 2 3 4 5
Principle 3: Confidentiality (Privacy)
ID Criterion NO PARTIALLY YES
5. Does the website have a privacy
policy detailing confidentiality of
users (e-mail addresses and content
of e-mail)?
1 2 3 4 5
6. Does the site inform visitors if their
data will be recorded and who can
access this information?
1 2 3 4 5
Principle 4: Information must be documented: Referenced and dated
ID Criterion NO PARTIALLY YES
7. Does the website contain date of
creation?
1 2 3 4 5
8. Does every page contain:
Date of last modification
Ethical and legal information
1 2 3 4 5
64
Author(s) information
Mission
Intended audience?
9. Are external sources provided? 1 2 3 4 5
Principle 5: Justification of claims
ID Criterion NO PARTIALLY YES
10. Are all claims backed up with scientific
evidence?
1 2 3 4 5
11. Are all brand names clearly identified? 1 2 3 4 5
Principle 6: Website contact details
ID Criterion NO PARTIALLY YES
12. Are the contact details of the
author(s)/editor(s) clearly accessible from
anywhere on the site?
1 2 3 4 5
Principle 7: Disclosure of funding sources
ID Criterion NO PARTIALLY YES
13. Are the source(s) of funding provided? 1 2 3 4 5
Principle 8: Advertising policy
ID Criterion NO PARTIALLY YES
14. Is the advertising policy of the website
clearly explained?
1 2 3 4 5
65
Appendix 2.2: The DISCERN Tool
ID CRITERION NO PARTIALLY YES
1.
Are the aims clear? 1 2 3 4 5
2.
Does it achieve its aims? 1 2 3 4 5
3.
Is it relevant? 1 2 3 4 5
4. Is it clear what sources of information
were used to compile the publication
(other than the author or producer)?
1 2 3 4 5
5. Is it clear when the information used
or reported in the publication was
produced?
1 2 3 4 5
6. Is it balanced and unbiased? 1 2 3 4 5
7. Does it provide details of additional
sources of support and information?
1 2 3 4 5
8. Does it refer to areas of uncertainty? 1 2 3 4 5
9. Does it describe how each treatment
works?
1 2 3 4 5
10. Does it describe the benefits of each
treatment?
1 2 3 4 5
11. Does it describe the risks of each
treatment?
1 2 3 4 5
12. Does it describe what would happen if
no treatment is used?
1 2 3 4 5
13. Does it describe how the treatment
choices affect overall quality of life?
1 2 3 4 5
14. Is it clear that there may be more than
one possible treatment choice?
1 2 3 4 5
15. Does it provide support for shared
decision-making?
1 2 3 4 5
16. Based on the answers to all of the
above questions, rate the overall
1 2 3 4 5
66
quality of the publication as a source
of information about treatment choices
For question 16:
Low
Moderate
High
Serious or
extensive
shortcomings
Potentially
important but not
serious
shortcomings
Minimal
shortcomings
1 2 3 4 5
67
Appendix 2.3 Sickle Cell Anaemia Website
Background Information on the condition
1. Is SCA clearly defined/ explained?
2. Is information provided specifically for patients who have been diagnosed with SCA?
3. Are diagrammatic representations provided for normal and SCA blood types and are these
explained clearly?
4. Does the website mention how SCA is inherited and are the genetic links discussed?
Risks, Diagnosis & Prevention
5. Does the website discuss risks of SCA to current family members?
6. Does the website discuss risks of SCA to future family members (offspring)?
7. Does the site provide information on how the disease can be diagnosed?
8. Is the prevention of the spread of the disease to offspring(s) discussed?
9. Does the site provide information on the symptoms of SCA
Treatments & side effects of treatments
10. Are treatment methods described on the site?
11. Are the side effects of the treatments discussed on the website?
12. Does the site provide information on the quality of life of an SCA patient?
13. Is pain and pain management discussed?
14. Are the effects that SCA has on the organs discussed?
15. Does the site discuss how patients’ diet management can help with the control of the disease
Support for patients and carers of SCA
16. Does the site provide information on how to cope with the illness- physically and emotionally?
17. Does the site provide information of online and community support groups?
18. Is there a section specifically for family and carers of SCA patients?
19. Does the site provide information of other patients’ experiences/Is there a forum for site
users?
20. Is there information on how to access further information?
21. Is the information on the site updated recently? (Within the past two years)
Marking Code:
NO PARTIALLY YES
1 2 3 4 5
68
Appendix 3: Results of Evaluation Tools
Appendix 3.1: HON Code Results
WEBSITES HON % TOTAL
HON Position
Medicinet 95.7 1
Baby Centre 88.5 2
Patient 88.5 2
Mayo Clinic 87.1 4
OMIM 87.1 4
Teenshealth 87.1 4
Web MD 85.7 7
Boots 82.9 8
Radiopedia 81.4 9
Healthline 78.6 10
Pysio-pedia 78.5 11
Truth in Science 78.5 11
Answers 77.1 13
Sickle Cell Anaemia 77.1 13
Gp Notebook 74.3 15
Health Grades 74.3 15
Cleveland Clinic 72.9 17
RSNA 72.9 17
UMM 72.8 19
Emedicine 71.4 20
NY Times 71.4 20
Hematology 70 22
Bupa 68.6 23
CDC 68.6 23
Labtests online 67.1 25
Genetics Home Reference 65.7 26
Medic 8 65.7 26
Scinfo 65.7 26
Wep Sickle Cell 64.3 29
Nursing Times 62.3 30
Genetics Education 58.6 31
Right Diagnosis 58.6 31
Wikipedia 57.1 33
UK Essays 55.7 34
NHLBI 51.4 35
Social Styrelsen 51.4 35
CNN 50 37
NHS 50 37
RCOG 50 37
WHO 48.6 40 Clinical Knowledge Summaries 47.1 41
SCYSS 47.1 41
BBC 45.7 43
69
FAQs 45.7 43
Public Health England 45.7 43
Science Museum 41.4 46
Blood 40 47
Learn Genetics 35.7 47
ACLT 31.4 49
Answers for Healing 31.4 49
70
Appendix 3.2 DISCERN Results
WEBSITES DISCERN % TOTAL
DISCERN Position
Mayo Clinic 83.8 1
Patient 83.8 1
Emedicine 82.5 3
Teenshealth 81.3 4
Baby Centre 78.8 5
NHS 78.8 5
Answers 76.3 7
NY Times 76.3 7
Truth in Science 76.3 7
Healthline 75 10
Web MD 75 10
Pysio-pedia 72.5 12
Social Styrelsen 71.3 13
UMM 71.3 13
Bupa 70 15
Clinical Knowledge Summaries 70 15
Right Diagnosis 70 15
Wikipedia 68.8 18
NHLBI 67.5 19
Medicinet 66.3 20
CNN 65 21
Nursing Times 65 21
RSNA 65 21
Health Grades 62.5 24
Labtests online 60 25
Radiopedia 60 25
Boots 57.5 27
Answers for Healing 55 28
Hematology 55 28
FAQs 52.5 30
Genetics Home Reference 52.5 30
Learn Genetics 50 32
Medic 8 50 32
Scinfo 48.8 34
SCYSS 48.8 34
UK Essays 48.8 34
Wep Sickle Cell 48.8 34
CDC 47.5 38
Public Health England 46.3 39
Sickle Cell Anaemia 46.3 39
Gp Notebook 43.8 41
WHO 40 42
Genetics Education 37.5 43
OMIM 37.5 43
71
ACLT 33.6 45
Blood 31.3 46
Cleveland Clinic 31.3 46
Science Museum 31.3 46
RCOG 30 49
BBC 21.3 50
72
Appendix 3.3 Sickle Cell Anaemia Results
WEBSITES SCA TOOL % TOTAL
SCA TOOL Position
NHLBI 81.9 1
Medicinet 80.9 2
NHS 79 3
Mayo Clinic 77.1 4
NY Times 76.2 5
Baby Centre 74.3 6
Bupa 71.4 7
Scinfo 71.4 7
Truth in Science 70.5 9
Web MD 70.5 9
Teenshealth 69.5 11
Wikipedia 68.6 12
Answers 66.7 13
Hematology 66.7 13
Wep Sickle Cell 65.7 15
Emedicine 62.9 16
Pysio-pedia 62.9 16
Patient 61.9 18
Medic 8 61 19
Social Styrelsen 61 19
FAQs 60 21
UMM 60 21
CNN 57.1 23
Health Grades 55.2 24
UK Essays 55.2 24
Nursing Times 54.3 26
Clinical Knowledge Summaries 53.3 27
Right Diagnosis 52.4 28
RSNA 52.3 29
Learn Genetics 51.4 30
OMIM 50.5 31
SCYSS 49.5 32
Answers for Healing 48.6 33
Healthline 48.6 33
Public Health England 47.6 35
Boots 46.7 36
Labtests online 46.7 36
RCOG 46.7 36
Genetics Education 45.7 39
Cleveland Clinic 43.8 40
ACLT 41.9 41
CDC 41.9 41
Radiopedia 40 43
Blood 39 44
73
Genetics Home Reference 37.1 45
WHO 37.1 45
Science Museum 34.3 47
Sickle Cell Anaemia 31.4 48
BBC 27.6 49
Gp Notebook 27.6 49
74
Appendix 3.4 Readability Results
WEBSITES FRE Score
FRE Rank
FKGL Score
FKGL Rank
ACLT 53.5 18 10.6 25
Answers 28.2 44 14.2 6
Answers for Healing 48.2 23 10.7 23
Baby Centre 70.2 2 6.9 49
BBC 68.9 3 7.3 48
Blood 53.6 17 10.2 31
Boots 55.6 15 9.2 38
Bupa 57.4 13 9.6 34
CDC 61.4 7 9.7 33
Cleveland Clinic 59 11 8.6 42
Clinical Knowledge Summaries 49.2 22 10.5 27
CNN 53.8 16 8.9 39
Emedicine 22.4 48 13.9 8
FAQs 34.7 38 12.3 15
Genetics Education 32.4 39 13.2 11
Genetics Home Reference 39 34 11.4 17
Gp Notebook 38.3 35 11.1 19
Health Grades 43.9 31 10.7 23
Healthline 58.7 12 7.7 46
Hematology 41.1 32 12.7 13
Labtests online 52.7 20 10.4 30
Learn Genetics 56.5 14 9.6 34
Mayo Clinic 53.2 19 9.4 37
Medic 8 59.8 9 8.3 43
Medicinet 45.3 29 10.8 22
NHLBI 61.7 6 8 44
NHS 45.4 28 11.1 19
Nursing Times 47.2 25 11 21
NY Times 45.2 30 10 27
OMIM 16.2 50 16.8 1
Patient 20.9 49 14.5 3
Public Health England 59.3 10 8.7 40
Pysio-pedia 38.3 35 12.1 16
Radiopedia 23.5 47 13.7 9
RCOG 25.1 46 15.1 2
Right Diagnosis 41.1 32 10 32
RSNA 27.9 45 13.5 10
Science Museum 48.1 24 10.5 27
Scinfo 64 4 7.6 47
SCYSS 61.9 5 8.7 40
Sickle Cell Anaemia 30.6 42 14.14 7
Social Styrelsen 36.8 37 12.4 14
Teenshealth 49.7 21 11.4 17
Truth in Science 31.4 40 14.3 5
75
UK Essays 47 26 10.6 25
UMM 47 26 9.5 36
Web MD 77.3 1 6 50
Wep Sickle Cell 60.2 8 8 44
WHO 31.6 40 13 12
Wikipedia 30.1 43 14.5 3
76
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