Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

We have previously written about ‘overdiagnosis’ – the diagnosis of an illness that would never have caused symptoms or death had it remained undetected – and how the majority of the public are unfamiliar with the concept and find it difficult to understand. We have also looked at the various ways that health websites describe it in the context of breast cancer screening; we previously found that most UK websites include some relevant information, in contrast to the last similar study from 10 years ago. This led us to think about how it might be possible to better explain the concept to people. Although ‘overdiagnosis’ is the most commonly used label, its meaning is probably difficult to infer if people are unfamiliar with it (and most people are). We wanted to test whether other terms might be seen as more intuitive labels that would help communicate the concept to the public.

We carried out a large survey in which we asked around 2,000 adult members of the public to read one of two summaries describing overdiagnosis. These summaries were based on information leaflets that the NHS has already used extensively in England. We asked people whether any of a series of possible alternative terms made sense to them as a label for the concept described and whether they had encountered any of the terms before.

What did we find?

A fairly large proportion of people (around 4 out of 10) did not think any of the seven terms we suggested were applicable labels for the concept as we described it. We also found that no single term stood out as being seen as particularly appropriate. The term most commonly endorsed (“unnecessary treatment”) was only rated as appropriate by around 4 out of 10 people. Another important finding was that around 6 out of 10 people had never encountered any of the terms we suggested and that the most commonly encountered term (“false positive test results”) was only familiar to around 3 out of 10 people. You can read the full paper here.

What were our conclusions?

We were disappointed that we did not find a term that was clearly considered to be an intuitive label for the concept of overdiagnosis. However, this was not entirely surprising because we know from several studies that it is unfamiliar to most people. It is not a given that this will always be the case: Organisations like the NHS and health charities are continually telling the public about overdiagnosis in various ways and if the concept becomes more familiar and better understood, people may be more inclined to identify a term that makes sense and which can then be used to communicate the concept. It is also possible that terms other than the 7 we looked at might already be suitable. Since the terms we looked at were generally unfamiliar, one recommendation we can make in the meantime is that it might be better to avoid specific labels like “overdiagnosis” when communicating the issue to people; explicit descriptions might be more helpful.

by Amanda Chorley and Jo Waller

Cancer screening programmes, such as breast, cervical, and bowel, are an important tool in the fight against cancer. Many people are aware of the value of early detection of cancer, which breast screening and the Faecal Occult Blood test (FOBt) part of bowel screening offer, which allows for treatment at an earlier stage when it is more likely to be effective. But are people aware that cervical screening and bowel scope screening (also known as flexible sigmoidoscopy, or FS) primarily aim to prevent cancer by identifying and removing abnormalities which may progress into cancer at a later date? This is the question we looked to answer in our recently published paper¹ in the Journal of Medical Screening.

As part of a larger survey on attitudes and behaviours surrounding cancer, we asked 1433 middle aged and older adults what they thought the main purpose of each of these screening programmes was. We found that while the majority of respondents were aware that breast screening (77.9%) and FOBt (73.2%) aimed to detect cancer early, only 17.6% knew that cervical screening primarily aimed to prevent cancer. For bowel scope screening the figure was only 13.8%. Overall only 13 people correctly identified the purpose of all four screening programmes, which is just under 1% of respondents.

We also looked at whether people had participated in each programme in the past to see whether that had any effect on awareness of the purpose of the programme. People who had been sent a test kit, and those who had completed and returned the kit were more likely to know that FOBt is designed to detect cancer early. For breast screening, only those having participated in screening were more likely to know that it was aimed at early detection. Having received an invitation did not seem to have an effect on knowledge of the purpose of the test.

However for both cervical screening and bowel scope screening neither those who had received an invitation nor those who had actually participated in the programme were any more likely to be aware of the preventive nature of the programme than respondents who hadn’t been invited or participated. This is despite the leaflets accompanying invitations clearly stating prevention as the main purpose.

On the one hand it is positive that public health messages on the importance of the early detection of cancer have been so effective, and that the majority of people recognise this to be the purpose of breast screening and FOBt. However, for people to make an informed choice about whether to participate in a screening programme they need an understanding about what the screening test aims to do, as well as any risks and benefits. Our survey suggests that this is not the case for cervical screening and bowel scope. As well as this lack of awareness being an issue for informed choice, it could also have consequences for how people engage with the screening programmes. People may end up avoiding screening tests if they are afraid they might be told they have cancer^{2, 3}. Knowing that some programmes can prevent cancer by finding and removing abnormalities may help to reduce these fears. Other studies have shown that women invited to colposcopy after having an abnormal result from their smear test sometimes mistakenly believe they have cancer^{4, 5}. A better awareness that cervical screening mainly looks for cell abnormalities which can be removed before they have a chance to turn into cancer may help in reducing stress and worry about the abnormal result.

If leaflets aren’t getting these messages across effectively, one of the priorities for the future will be finding different ways to communicate about cancer screening so that everyone understands what the tests are trying to do.

1. Chorley AJ, Hirst Y, Vrinten C, Wagner Cv, Wardle J and Waller J. Public understanding of the purpose of cancer screening: A population-based survey. J Med Screen. 2017; 0: 0969141317699440.
2. Vrinten C, Waller J, von Wagner C and Wardle J. Cancer fear: facilitator and deterrent to participation in colorectal cancer screening. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2015; 24: 400-5.
3. Andersen MR, Smith R, Meischke H, Bowen D and Urban N. Breast cancer worry and mammography use by women with and without a family history in a population-based sample. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2003; 12: 314-20.
4. Kavanagh AM and Broom DH. Women’s understanding of abnormal cervical smear test results: a qualitative interview study. BMJ (Clinical research ed). 1997; 314: 1388.
5. Gray NM, Sharp L, Cotton SC, et al. Psychological effects of a low-grade abnormal cervical smear test result: anxiety and associated factors. British journal of cancer. 2006; 94: 1253-62.

By Nathalie Kliemann, Fiona Johnson and Helen Croker

Access to nutrition information is widespread and many people rely on sources such as newspapers, websites, magazines, and TV programmes. Some of the information is conflicting and misleading, and the sheer quantity can be overwhelming, leaving many people confused as to what is the current nutrition advice. In an attempt to understand how well UK adults understand nutrition information, in the 1990’s researchers at the Health Behaviour Research Centre developed a questionnaire to assess general nutrition knowledge (GNKQ) in the UK adult population. This measure has been widely used since then and is cited in over than 150 research papers, which have explored the relationship between nutrition knowledge and other factors, such as dietary intake, socio-economic status, and use of food labels. It has also been adapted for use in different populations and translated into other languages, including Turkish, Romanian, and Portuguese.

Why update it?

Since the GNKQ was developed 20 years ago,  there have been developments in our understanding of the links between diet and health, and big changes in the food supply including the introduction of new types of foods and processing methods. This has resulted in new advice regarding good nutrition, and the GNKQ needed updating to reflect the way we eat today and bring it into line with current recommendations. Our recent publication reported the development of a revised GNKQ, with four main sections measuring: knowledge of dietary recommendations; food groups; healthy food choices, and links between diet and ill health. We also conducted 4 studies to test how well the questionnaire measures nutrition knowledge in adults (tests of reliability and validity).

Main results

Our findings showed that the revised version of the GNKQ is a consistent, reliable and valid measure of nutrition knowledge, and that scores improve when people undertake nutrition training. It also showed some differences between people, as the GNKQ-R scores were higher among women, people with a degree, those with better health status and in younger adults. The sections can be administered individually to measure specific areas of nutrition knowledge. We concluded that the revised version of the GNKQ will be a useful tool to assess nutrition knowledge among the UK adult population, and identify groups of people who might benefit from nutrition education to navigate their way through the mass of nutrition information available.

Article link:

Kliemann N, Wardle J, Johnson F & Croker H. Reliability and validity of a revised version of the General Nutrition Knowledge Questionnaire. European Journal of Clinical Nutrition, 2016, 1-7.

www.nature.com/ejcn/journal/vaop/ncurrent/pdf/ejcn201687a.pdf

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In our last blog, we talked about ‘overdiagnosis’, a concept that many people are unfamiliar with – that is, when a medical test finds an illness that would never have caused any harm during a person’s lifetime.

As a follow-up study, we were interested in how much information the UK and Australian public could find online about overdiagnosis in the specific context of breast cancer screening.

Why breast cancer screening?

We chose breast screening because it is a setting in which the issue of overdiagnosis has received a lot of attention in the UK in recent years: in 2011, Cancer Research UK and the Department of Health commissioned a review of studies with the aim of understanding how much overdiagnosis happens in breast screening.

Likewise, the NHS recently made substantial changes to the information leaflets provided to women invited for breast screening, with the aim of ensuring that they would understand that overdiagnosis was one possible outcome of being tested.

Breast screening sometimes diagnoses ‘ductal carcinoma in situ’ or ‘DCIS’, which is an abnormality that can become a symptomatic cancer over time. However, it can also be slow growing and never pose a health risk, meaning that a large proportion of overdiagnosis in breast screening is due to DCIS.

As well as finding out what kind of information people could find about overdiagnosis on health websites, we were interested in what explanations those websites provided about DCIS, and also what kinds of statistics were used to give the public a sense of how many people are affected by overdiagnosis.

We used a Google search for ‘breast cancer screening’ to find the most relevant health websites in the UK and Australia (such as NHS Choices and Cancer Australia). We examined in detail ten websites from the UK and eight from Australia.

What did we find?

Our main findings were that most UK websites included some information about overdiagnosis and also DCIS. The websites provided a range of statistics stating, for example, that every year around 4,000 women in the UK are overdiagnosed and overtreated following screening and that around 3 in 200 women screened would be overdiagnosed and overtreated (considering women aged between 50 and 70 years undergoing screening every three years).

Such information was available less often on Australian websites, although the kind of information was similar when it was present (and several websites linked to more detailed websites instead of hosting the information themselves).

Why is this important?

One reason for doing this research was that a similar study had been carried out more than ten years ago in 2000, showing that overdiagnosis and DCIS were rarely described. We thought that things might have changed in the meantime as more and more people use the internet to understand health issues.

In fact, we found that although not every piece of information on overdiagnosis and DCIS is available on every website, it is more available than it was in the past. In time, this might lead to a greater level of public awareness about the issue.

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In recent years, doctors and academics have become more and more interested in a problem referred to as ‘overdiagnosis’. There are several ways that overdiagnosis can be defined.

One particularly useful way is to think of it as the diagnosis of a disease that would never have caused a person symptoms or led to their death, whether or not it had been found through a medical test. In other words, even if a person had not had the test, the disease would never have caused them any harm.

Catching it early

It may not be obvious how this can happen. As an example, imagine a woman going for breast screening, which tries to find cancer at an early stage, before it starts causing symptoms.

The thinking behind this type of test is that if the disease is found early, it will be easier to treat and there is a higher chance of curing it. Most people are familiar with this idea that ‘catching it early’ is a good thing.

So, suppose a woman who has no symptoms goes for screening and the test finds cancer: she would usually go on to have treatment (e.g. surgery).

However, although she has no way of knowing for sure, it is possible that the cancer was growing so slowly that she would have lived into old age and died of something unrelated, without ever knowing about the cancer, had she not gone for screening.

The cancer is real but the diagnosis does not benefit the woman at all; it results in treatment that she did not need (‘overtreatment’). In fact, if she had not had the screening test, she would have avoided all the problems that come with a cancer diagnosis and treatment.

What research has found

If you find the idea of overdiagnosis counter-intuitive, you are not alone. Several studies have tried to gauge public opinion on the issue and found that this is a fairly typical view, partly because the notion that some illnesses (like cancer) might never cause symptoms or death is one that does not receive much attention and is often at odds with our personal experiences.

Results from an Australian study in 2015 found that awareness of ‘overdiagnosis’ is low – in a study of 500 adults who were asked what they thought it meant, only four out of ten people gave a description of the term that was considered approximately correct and these descriptions were often inaccurate to varying degrees.

For example, people often thought in terms of a ‘false positive’ diagnosis (diagnosing someone with one illness when really they do not have that illness at all), or giving a person ‘too many’ diagnoses.
Is this the same in the UK?

We wanted to find out whether this was also true in the UK. We asked a group of 390 adults whether they had come across the term ‘overdiagnosis’ before and asked them to describe what they thought it meant in their own words, as part of an online survey.

We found that only a minority (three out of ten people) had encountered the term and almost no-one (10 people out of all 390) described it in a way that we thought closely resembled the concept described above.

It was not always clear how best to summarize people’s descriptions but we found that people often stated that they had no knowledge or had similar conceptions to the Australian survey such as ‘false positives’ and ‘too many’ diagnoses.

Some descriptions were somewhat closer to the concept of overdiagnosis such as an ‘overly negative or complicated’ diagnosis (e.g. where the severity of an illness is overstated) but there were also some descriptions that we found more surprising such as being overly health-conscious (e.g. worrying too much about health issues).

Room for improvement

Many people who work in public health and healthcare believe that people should be aware of the possibility of overdiagnosis, particularly since they will eventually be offered screening tests in which there is this risk.

In this respect, our findings show that there is substantial room for improvement in how we inform the public about overdiagnosis. In part, this may be due to the term itself not having an intuitive meaning, in which case other terms might be more helpful (for example the term ‘unnecessary detection’).

This could be tested in future studies. Our findings also motivated us to find out the extent to which trusted information sources (such as websites run by the NHS and leading health charities) are already providing information on overdiagnosis.

We would like to share the findings from this study in a follow-up blog post. We will be posting this here soon.

This was originally posted on the BioMed Central blog network.

Today, research investigating ways to increase the number of people taking part in the national bowel cancer screening programme in England is published in The Lancet.  This research was conducted by UCL, along with their collaborators at Imperial College London, Queen Mary University of London and each of the NHS Bowel Cancer Screening Hubs across England.

Bowel cancer (also known as colorectal cancer) remains one of the most commonly diagnosed cancers in the UK and is the second biggest cause of cancer deaths. The NHS in England manages a bowel cancer-screening programme which aims to find bowel cancer at an early stage when it can be treated more successfully. The screening programme invites men and women to complete a home-based test called a FOB (faecal occult blood) test every two years from age 60 to 74.

However, only about 1 in 2 people actually take part in the screening programme and data shows that the number of people doing the test is much lower (35%) among people who live in some of the poorest areas in England compared to those living in the richest areas where uptake is about 60% (von Wagner et al, 2011).

As everyone can benefit from having bowel cancer found early out team of researchers developed four separate interventions to try and reduce the difference in uptake between people in poor and rich areas. Each intervention was tested in a randomised controlled trial built into the Bowel Cancer Screening Programme and involved 747,856 people across the whole of England.

The interventions consisted of simple changes or additions to the material people already receive from the Bowel Cancer Screening Programme when they are first invited to take part:

1. Gist leaflet: An additional ‘gist’ leaflet was added to the usual information material sent out to invitees. This leaflet summarised the key points about bowel cancer screening using simple language and in an ordered format to help guide the reader through all the information needed to make a screening decision. The front page included bullet points of facts considered essential to making a screening decision e.g. how common bowel cancer is. The reader was then encouraged to turn the page for more information about the screening test e.g. how the test works and what happens after completing the test. For those wanting further, more detailed information, they were instructed to read the usual ‘Facts booklet’ sent with the leaflet (Smith et al, 2013; Smith et al, 2013, Smith et al, 2015).
2. Narrative leaflet: An additional ‘narrative’ leaflet was added to the usual information material sent out to invitees. This leaflet provided stories and quotes from people who had previously taken part in bowel cancer screening, selected to address known barriers (e.g. disgust at having to handle poo samples) and motivators (e.g. having peace of mind from a negative test result) to screening. Photos of those who provided their stories of screening were included to legitimise the quotes and help the reader connect with others who have overcome barriers and completed the screening test (McGregor et al, 2015).
3. General Practitioner (GP) Endorsement: The usual invitation letter included a section at the top highlighting that the individual’s GP practice supported bowel cancer screening. Wendy Atkin and her team at Imperial College London contacted all GP practices in England to ask them to help with this study and 80% agreed to have their support stated on the letters.
4. Enhanced Reminder: The usual reminder letter included a section at the top highlighting the statement ‘A reminder to you’ to try and get people’s attention. Towards the end of the letter a section was added to highlight key points to remember when thinking about whether to take part in screening or not: a) that a person’s risk of getting bowel cancer increases as they get older, b) that finding bowel cancer early can make successful treatment more likely, and c) that it is not too late to do the test.

The results found that the GP Endorsement and the Enhanced Reminder increased overall uptake of bowel cancer screening, but the effect was very small. Importantly, only the Enhanced Reminder managed to narrow the gap between those living in rich and poor areas.

Unfortunately, despite being found to increase knowledge about bowel cancer and screening (Gist leaflet), and intentions to have screening (Narrative leaflet) in earlier, smaller studies, both leaflets failed to make a positive impact on the number of people who actually take part in bowel cancer screening.

These results show just how difficult it is to change health related behaviours and the continuing challenge faced by public health researchers. It would appear that more profound changes to the current bowel cancer screening programme are needed to substantially reduce the gap between people living in rich and poor areas.

In the meantime, even a small increase in uptake can have a huge impact on the national burden of bowel cancer. The GP Endorsement and the Enhanced Reminder are simple, low-cost interventions that could easily and quickly be integrated into the current programme and, therefore, should perhaps be considered for adoption by the NHS.

This research was funded by the National Institute for Health Research and the results are now published in The Lancet.

Wardle, von Wagner et al (2015). Effects of evidence-based strategies to reduce the socioeconomic gradient of uptake in the English NHS Bowel Cancer Screening Programme (ASCEND): four cluster-randomised controlled trials. The Lancet, Published Online:08 December 2015.

Have you ever searched for information about cancer? Chances are, if you have, it was a Google search that led to a website like WebMD, the Mayo Clinic, or a charity such as the American Cancer Society or Cancer Research UK. Research on cancer information seeking behaviour of the public tells us that most people first turn to the Internet, with more in-depth searching possibly extending to talks with friends, family, and health professionals. But who searches for cancer information? We already know that people in America who actively seek out information about cancer are most often well educated, have a high income, are under age 65, are white, and have a usual source of health care (1).

Currently, the global rise in cancer incidence has coincided with the technological revolution that sees internet and mobile usage increasing across the globe (2). As a result, searches for cancer information have increased among the public, but these increases are occurring disproportionately among people with higher levels of education and income (3). This trend indicates that social inequalities in health communications are widening, and will continue to do so. The outcome would be that people who are the best educated and most economically advantaged would have the best opportunities for access to, and use of, information about cancer to help them make informed decisions about prevention and early diagnosis.

To learn more about this issue, we conducted a study investigating the relationships between literacy, cancer fatalism, and active seeking of cancer information (4). Cancer fatalism can be described as deterministic thoughts about the external causes of the disease, the inability to prevent it, and the inevitability of death at diagnosis (5). We wondered whether low literacy and cancer fatalism pose barriers to seeking cancer information, and in particular whether low literacy might lead to fatalistic beliefs about cancer, which might then in turn stop people from seeking out cancer information.

Our logic model of the relationships between low health literacy, cancer fatalism, and cancer information seeking

We used data from the publicly available U.S. Health Information National Trends Survey (HINTS). The HINTS is a great resource for anyone who interested in trends in the use of cancer-related information among the general American public. The survey is nationally representative of American adults aged 18 years and over. We used data from the third cycle of the fourth round of HINTS, which was conducted in 2013. We used data from 2,657 American adults who had no cancer history. The measures of interest were:

Health literacy

• Reading comprehension of a nutrition label, scored out of 4 points

Cancer fatalism

• Agreement/disagreement with each of three statements:
• “It seems like everything causes cancer”
• “There’s not much you can do to lower your chances of getting cancer”
• “When I think about cancer, I automatically think about death”

Cancer information seeking

• Asked respondents whether they had ever searched for cancer information

The results shown below are representative of the American public aged 18 years and over.

What did we find?

One-third (34%) of American adults had low literacy, according to our measure. This is a substantial proportion of the population, given that the measure assessed basic reading comprehension of a nutrition label, which is important for health.

Most American adults (66%) agreed that, “it seems like everything causes cancer”. However, most disagreed (71%) with “there’s not much you can do to lower your chances of getting cancer”. Responses were more evenly balanced to, “when I think about cancer, I automatically think of death”, with 58% agreeing.

Just over half (53%) of the American public had ever searched for information about cancer. Independently of sociodemographic factors, adults with low literacy were less likely to search for information than those with high literacy. People who agreed that, “there’s not much you can do to lower your chances of getting cancer” were also less likely to search for cancer information. The other two fatalistic beliefs were not associated with cancer information seeking, but people with low income and low education were less likely to actively seek out cancer information.

Finally, we found that while literacy had a strong direct effect on cancer information seeking, the fatalistic belief, “there’s not much you can do to lower your chances of getting cancer” explained about 14% of the effect of literacy on cancer information seeking. This means that people with low literacy are slightly more likely to hold this fatalistic belief, which in turns acts as a barrier to seeking out information.

What does it mean?

This study indicates that addressing health literacy and fatalism about cancer prevention should be a priority for future cancer communication strategies. Population groups with less access to health care, who are the most vulnerable to low literacy and fatalistic beliefs about cancer, are also the least likely to benefit from cancer information. We feel that strategies to improve public beliefs and knowledge about cancer might be best placed outside of the clinical environment. For example, advertising strategies and public events in opportunistic settings such as road shows might help to increase incidental exposure to cancer information among those people who are least likely to actively seek it (6-8). Communication strategies such as patient narratives, such as those found on the Prevent Cancer Foundation website, also show promise. Overall, fatalism and health literacy may represent useful targets for cancer control strategies aiming to increase all people’s abilities to manage their risk of cancer, and to reduce social inequalities across the continuum of cancer control.

The full paper is available at Health Education and Behavior.

References

1. Finney Rutten LJ, Squiers L, Hesse B. Cancer-Related Information Seeking: Hints from the 2003 Health Information National Trends Survey (HINTS). J Health Commun 2006;11:147-156. doi: 10.1080/10810730600637574
2. Viswanath K. The communications revolution and cancer control. Nat Rev Cancer 2015;5:828-835. doi:10.1038/nrc1718
3. Finney Rutten LJ, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, et al. Cancer-related information seeking among cancer survivors: Trends over a decade (2003-2013). J Cancer Educ 2015 [Epub ahead of print]. doi:10.1007/s13187-015-0802-7
4. Kobayashi LC, Smith SG. Cancer fatalism, literacy, and cancer information seeking in the American public. Health Educ Behav 2015 [Epub ahead of print]. doi: 10.1177/1090198115604616
5. Niederdeppe J, Levy AG. Fatalistic beliefs about cancer prevention and three prevention behaviors. Cancer Epidemiol Biomarkers Prev 2007;16:998-1003.
6. Ironmonger L, Ohuma E, Ormiston-Smith N, Gildea C, Thomson CS, Peake MD. An evaluation of the impact of large-scale interventions to raise public awareness of a lung cancer symptom. Br J Cancer 2015;112:207- 216. doi:10.1038/bjc.2014.596
7. Power E, Wardle J. Change in public awareness of symptoms and perceived barriers to seeing a doctor following Be Clear on Cancer campaigns in England. Br J Cancer 2015;112:S22-S26. doi:10.1038/bjc.2015.32
8. Smith SG, Rendell H, George H, Power E. Improving cancer control through a community-based cancer awareness initiative. Prev Med 2014;60:121-123. doi:10.1016/j.ypmed.2013.11.002

Ageing involves many challenges for health and well-being. One under-recognised problem is that of declining literacy skills. While we are familiar with general issues of ageing such as loss of eyesight or physical mobility, what happens to literacy skills during ageing is much less well understood. Literacy is important to health during ageing because literacy is fundamental to managing health. For example, proper taking of medications, understanding what the doctor says, and understanding of written medical information all rely on having adequate literacy. When literacy is used in health contexts such as these, we refer to it as ‘health literacy’. The American Institute of Medicine defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (1). The consequences of low health literacy include poor self-care of chronic disease, unnecessary use of emergency services, low use of preventive health services such as cancer screening, and increased risk of mortality (2–4).
A consistent body of evidence indicates that health literacy declines during ageing (5–7). This is thought to be caused by the normal ageing-related decline in cognitive abilities such as mental processing speed and memory (5,8). In our study, we were curious to see whether cognitively stimulating activities would help older adults to maintain their health literacy skills, regardless of any cognitive decline they experienced. In particular, we examined whether internet use and engagement in several different types of social activities might help older adults to maintain health literacy. We used data from almost 4500 men and women aged 52 years and over in the English Longitudinal Study of Ageing (ELSA). The ELSA is a population-representative longitudinal study of English adults aged 50 and over, which aims to capture the experience of ageing in England. Since 2002, the study participants have been interviewed every two years about their health, economic, and social conditions. Data on health literacy was measured in 2004 and again in 2010 using a basic reading comprehension test of a medicine label.
At the start of the study, we found that nearly one-third of adults had low health literacy, and that 18% of the study sample experienced a decline in their health literacy skills during the study follow-up period (9). People who were most at risk of declining health literacy were older, had no educational qualifications, had relatively low wealth, were ethnic minorities, and had difficulties with activities of daily living. On the positive side, consistent internet use over the six year study follow up period and engagement in cultural activities such as attending the opera, theatre, art galleries, museums, concerts, or the cinema appeared to protect against health literacy decline (9). The other types of social activities that we looked at were civic activities including being a member of a trade union, environmental group, neighbourhood group, and volunteering, and leisure activities including being a member of a sport or social club, or attending educational or musical classes. Alone, participating in civic or leisure activities had no effect on health literacy during ageing.
When we looked at the combined effects of engaging in none, one, two, three, or four of internet use and each of civic, leisure, and cultural activities, we saw an additive effect where the more activities adults engaged in, the more likely they were to maintain health literacy skills (9). People who engaged in all four of internet use, civic activities, leisure activities, and cultural activities over the study follow-up period had half the odds of losing health literacy skills as people engaged in none of these activities. Importantly, all of these associations were independent of cognitive decline and other factors that might influence internet use and social activities such as wealth, social class, and health status.
What does this study mean? Well, first of all, that it is not inevitable that older people lose literacy skills as they age. It appears that internet use and social activities help with the maintenance of literacy skills. Even adults who experienced cognitive decline appeared to gain a benefit from using the internet and engaging in cultural activities. However, the main concerns are social inequalities in access to the internet and that cultural activities require time, money, and transportation. Older adults who are in poor health, have low wealth, and are from deprived backgrounds are the least likely to take advantage of the internet and to participate in cultural activities. They are also the most vulnerable to the loss of literacy skills as they age. Future research is needed to improve our understanding of how internet use and social engagement promote literacy skills, and to develop strategies to enable the most vulnerable individuals to benefit from technological advances and full participation in society.

Article reference: Kobayashi LC, Wardle J, von Wagner C. Internet use, social engagement and health literacy decline during ageing in a longitudinal cohort of older English adults. J Epidemiol Community Health 2014;epub ahead of print. doi: 10.1136/jech-2014-204733

Blog references:
1. Institute of Medicine. What is health literacy? In: Nielsen-Bohlman L, Panzer A, Hamlin B, Kindig D, editors. Health literacy: a prescription to end confusion. Washington D.C.: National Academies Press; 2004:31-58.
2. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011;155:97–107.
3. Kobayashi LC, Wardle J, von Wagner C. Limited health literacy is a barrier to colorectal cancer screening in England: Evidence from the English Longitudinal Study of Ageing. Prev Med 2014;61:100–5.
4. Bostock S, Steptoe A. Association between low functional health literacy and mortality in older adults: longitudinal cohort study. BMJ 2012;344:e1602.
5. Wolf MS, Curtis LM, Wilson EAH, Revelle W, Waite KR, Smith SG, et al. Literacy, cognitive function, and health: results of the LitCog study. J Gen Intern Med 2012;27(10):1300–7.
6. Paasche-Orlow MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, Rudd RR. The prevalence of limited health literacy. J Gen Intern Med 2005;20(2):175–84.
7. Gazmararian JA, Baker DW, Williams M V, Parker RM, Scott TL, Green DC, et al. Health literacy among Medicare enrollees in a managed care organization. JAMA 1999;281(6):545–51.
8. Federman AD, Sano M, Wolf MS, Siu AL, Halm EA. Health literacy and cognitive performance in older adults. J Am Geriatr Soc 2009;57(8):1475–80.
9. Kobayashi LC, Wardle J, von Wagner C. Internet use, social engagement and health literacy decline during ageing in a longitudinal cohort of older English adults. J Epidemiol Community Health 2014;epub ahead of print. doi: 10.1136/jech-2014-204733