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    The promises and pitfalls of Big Data for personalised health care.

    By Siu Hing ( Siu Hing ) Lo, on 12 December 2014

    Big Data is burgeoning. A quick search using Google Trends shows that worldwide interest took off exponentially since 2011 and is still on the rise. There also seems to be consensus that Big Data has huge potential to improve health services (Accenture Industrial Internet Insights Report for 2015). Of course, the use of large health datasets has a long tradition in epidemiology and other public health disciplines. However, the sheer scale, variety and complexity of Big Data means we increasingly rely on artificial intelligence to manage and analyse data. Simultaneously, there is a trend towards tailoring and personalising health care services, often facilitated by the increasing availability of personal data and more powerful analytical tools.

    Big Data certainly has the potential for gaining valuable insights. However, it could also be a double-edged sword, especially in the case of health care tailoring. Yes, Big Data could advance health risk ‘profiling’ and enable more cost-effective ways to tailor health services. But as Khoury and Ioannidis put it, the promise of Big Data also brings the risk of “Big Error”.

    Possibly the most obvious caveat lies in the critical interpretation of data (Susan Etlinger at TED talks, 2014). Data does not speak for itself. People need to make the leap from data to insights. One major challenge is how to understand the data. With its ever growing complexity, both the data and the analysis are more likely to be biased in a way that the human interpreter had not foreseen. In other words, the unknown unknown. Another related issue is researcher bias in interpreting the results. What do numbers really tell us about other people’s needs, preferences and perceptions? As complexity increases, fewer people will be able to familiarise themselves sufficiently with the data and analytical methods used to critique study results.

    A less obvious source of bias is the type of information sources that are relied on. Of course, Big Data is to be welcomed if it can yield useful insights. However, the promise of Big Data might overshadow the use of smaller scale (e.g. survey, qualitative interview, ethnographic) data and experimental studies. Research funding is finite and popular trends could unduly influence allocation of resources to studies proposing to use Big Data.

    The question is whether Big Data can live up to its promise without skilful, complementary use of other methods of inquiry. Despite all the advances in speech recognition and robotic engineering, human beings are generally still much better at understanding other people. Especially in the case of health service tailoring and personalisation, it seems that caution is warranted. After all, if Amazon’s algorithm suggests a book you don’t like, little is at stake and you can ignore the recommendation. But if an algorithm suggests a bad care plan, it would be a less trivial problem, especially if you cannot ignore it. Multidisciplinary collaborations addressing the same public health inquiry would be important for the “Big Picture” as well as the avoidance of “Big Error”. Although multidisciplinary collaboration is not always easy, different viewpoints can facilitate critical and reflective thinking, key ingredients for any meaningful research and truly personalised health care.

    To give a personal example, two of my earlier blog posts describe the behavioural insights I derived from studying records of 300,000 people invited for bowel cancer screening in the South of England. Perhaps reflecting wider trends, research psychologists like myself are using ever larger datasets to study people’s health behaviours and identify target groups for behaviour change interventions. However, one question we could not address in these studies was why people behaved the way they did, even if we could predict what they would do. Although these studies did not use Big Data, they illustrate the challenge we face using Big Data or any type of pre-existing data generated for purposes other than research. In order to improve public health, observing the status quo alone is not enough.

    Big Data has the potential to yield powerful insights for health service tailoring and personalisation. However, the process of arriving at these insights may pose considerable challenges. Critical thinking and the involvement of researchers who do not typically work with Big Data will be key to its effective use as a tool for health care research.

    References

    Accenture (2014), Industrial Internet Insights Report for 2015, Available at http://www.accenture.com/SiteCollectionDocuments/PDF/Accenture-Industrial-Internet-Changing-Competitive-Landscape-Industries.pdf

    Khoury, M.J. & J.P.A. Ioannidis (2014), Big data meets public health, Science, 346, 1054-1055.

    Lo, S.H., Halloran, S., Snowball, J., Seaman, H., Wardle, J. & C. von Wagner (2014), Colorectal cancer screening uptake over three biennial invitation rounds in the English Bowel Cancer Screening Programme, Gut, Published Online First: 7th May 2014, doi:10.1136/gutjnl-2013-306144.

    Lo, S.H., Halloran, S., Snowball, J., Seaman, H., Wardle, J. & C. von Wagner (2014), Predictors of repeat participation in the NHS Bowel Cancer Screening Programme, British Journal of Cancer, Published Online First: 27th November 2014, doi: 10.1038/bjc.2014.569.

    Susan Etlinger (2014), What do we do with all this Big Data?, Filmed September 2014 at TED@IBM http://www.ted.com/talks/susan_etlinger_what_do_we_do_with_all_this_big_data/transcript?language=en

    Obese people lose weight following a cancer diagnosis: but is the weight loss intentional?

    By Susanne Meisel, on 9 December 2014

    As I have discussed before, the relationship with cancer and weight is complicated. However, it is not only of interest to find out how weight impacts on cancer development, but also what happens to people’s weight once cancer is diagnosed and how this relates to cancer survival. For example, medication to treat cancer might make people more prone to weight gain. This could be problematic for people who are already overweight or obese before they were diagnosed with cancer, because an unhealthy weight has been linked to a higher chance of a cancer coming back. Alternatively, it is possible that a cancer diagnosis acts as a ‘teachable moment’ which may motivate people to change their lifestyle. This may help to avoid the cancer coming back after treatment.

    Our researchers looked in two large studies, one with people from the UK, and one from the US, at how BMI changed over time in people diagnosed with cancer; and those who stayed cancer-free. Importantly, they also looked at how weight change differed according to people’s weight status before diagnosis, as emerging evidence has indicated that weight loss may improve the prognosis for cancer survivors who are overweight or obese at the point of diagnosis.

    Over a four-year period, there was no difference in weight change between normal weight cancer survivors and normal weight cancer-free individuals in either the UK or the US. However, obese cancer survivors in the UK lost an average of 1.48kg vs. cancer-free obese individuals who lost an average of 0.25kg; and in the US, obese cancer survivors lost an average of 2.35kg in comparison to cancer-free obese participants who gained an average of 0.53kg. These results indicate that being diagnosed with cancer has little impact on weight in individuals who are a healthy weight, but is associated with significant weight loss among those who are obese.

    Given that there was very little weight loss in normal weight cancer survivors vs. those who were obese, these results suggests that obese cancer survivors may have made a conscious effort to lose weight and to keep it off. However, it is also possible that people who were obese were diagnosed with cancer at a later stage (I discussed here why this is often the case), and that their weight loss was due to their cancer being more advanced, or treatment having taken a greater toll on the body. Unfortunately, the researchers had no data on the stage at which cancers were diagnosed, or whether the weight loss they observed was intentional, so we cannot say which of these options is true. It is important to do more research to see how weight loss relates to cancer survival to investigate whether keeping a healthy weight after a cancer diagnosis really has benefits for surviving longer.

    Given that, on the whole, treatment for cancer is getting better, more and more people will survive cancer. Therefore, it is really important to find out what can be done for cancer survivors to improve their quality of life and to ensure that they remain cancer-free.

     

    Reference:

    Jackson SE, Williams K, Steptoe A & Wardle J (2014): The impact of a cancer diagnosis on weight change: findings from prospective, population-based cohorts in the UK and the US, BMC Cancer , 14:926  doi:10.1186/1471-2407-14-926

    http://www.biomedcentral.com/1471-2407/14/926/abstract

    Genetic testing for all? Results of a randomised controlled trial in people of Ashkenazi Jewish descent

    By Susanne Meisel, on 5 December 2014

    As I have discussed previously, genetic technology is developing at a breath-taking speed. This not only means that scientists gain better insights in the genetic contributors to disease development, but also that this comes at increasingly lower costs.

    Genetic testing is not new. In fact, it has been available on the NHS  for many years. However, to be eligible for testing, certain criteria have to be met; commonly, people need to have several affected relatives to qualify for genetic testing on the NHS.

    Now, with falling sequencing costs, the question of whether it would be beneficial to offer genetic testing to everyone in the population before conditions manifest becomes ever more pertinent. Proponents of the proposal argue that current approaches based on family history may miss a proportion of individuals because both individuals and healthcare providers have to recognise that there may be an increased risk of disease – this can be challenging if the family is small, or people are not very actively seeking out this information. However, other experts are more cautious and argue that large-scale genetic testing has the potential to cause more harm than good. Regardless, there are many practical, social, legal and ethical questions that have to be sorted out before genetic testing can be applied at a population level.

    Currently, in the clinical setting, genetic testing is only performed after thorough genetic counselling. Genetic counselling is defined as ‘a communication process, which aims to help individuals, couples and families understand and adapt to the medical, psychological, familial and reproductive implications of the genetic contribution to specific health conditions’. Genetic counsellors meet with people one-to-one and help them to make a decision whether or not they’d like to have testing. Although research to date has found that people commonly do not react badly to their genetic test results, genetic counselling is thought to play a large role in this because people would have discussed the possibility of an unfavourable result before they got testing. In addition, because people who get genetic tests to date come from high-risk families, they may to have thought a lot about their inherited risk. Therefore, they may be better prepared to cope with an unfavourable genetic test result.

    However, if lots of people in a population got genetic testing, the one-on-one model of genetic counselling would be impossible to maintain because it is far too costly and time-intensive. Some experts are concerned that providing access to genetic testing without proper genetic counselling to people who may be largely unaware of their inherited risk would result in a high rate of adverse psychological effects such as worry and anxiety.

    In the first study of its kind, our researchers wanted to find out what the effects of population-based genetic testing would be. They chose to look at the effects of returning genetic test results for risk of breast-and ovarian cancer (BRCA 1/2) in the Ashkenazi Jewish population. They picked this population because people of Ashkenazi Jewish descent have a higher chance to get breast-and ovarian cancer than people from other backgrounds and the mutations causing the increased risk are well-defined. People with one of these mutations have a very high chance to get cancer (50%-80% for breast; 20%-40% for ovarian).

    Specifically, the researchers wanted to investigate i) whether population-based genetic testing would be able to identify a greater proportion of mutation carriers than the current family history approach, ii) whether people would find testing acceptable, and iii) what the psychological effects (e.g. on anxiety and depression) of genetic testing would be in people which may not necessarily have a strong family history of breast-or ovarian cancer.

    Potential participants were recruited in the North London Jewish community. All individuals who registered their interest received genetic counselling before they enrolled into the study, and 1,034 (691 women, 343 men) decided to take part. Participants were randomly (by chance) split into two equally sized groups: In one group, all people would get genetic testing, and in the other, only people who would qualify for genetic testing under current NICE guidelines would get testing. However, this group could access testing after the end of the study if they wanted.

    Our researchers asked questions about people’s anxiety levels, depression, and general quality of life before people got genetic counselling (baseline); immediately after study enrolment; and at seven days and three months after people got their genetic test results. The researchers also asked the same questions after one, two and three years after people got their genetic test results, but the results of this bit of the study have yet to be analysed.

    In the group where all people were tested for their BRCA status, 13 carriers of a faulty gene were identified vs. 9 in the group which based the testing decision on family history; an increase in detection of 56%. In the family history group, 5 more carriers were detected after the study had finished. This means that current approaches are likely to miss a significant number of people of Ashkenazi Jewish descent who carry faulty BRCA mutations. As for adverse psychological effects, there were no differences between the 2 groups at either 7 days or 3 months after people received their genetic test results. In fact, overall anxiety and uncertainty decreased quite a bit, and positive experience scores increased.

    This study is the first to provide evidence that large-scale genetic testing may be beneficial and feasible; at least in certain subgroups of the population. However, in this study, all participants received one-to-one genetic counselling before they enrolled; so it is not possible to say what the effects would have been using a less tailored approach. This might be something that could be investigated in future research. Nonetheless, these results demonstrate that large-scale genetic testing may have real clinical value, and they may spark serious debate about whether the current guidelines should be amended, at least for people of Ashkenazi Jewish descent. After all, identifying BRCA carriers early may save lives.

     

     

    References:

    Manchanda R, Legood R, Burnell M, McGuire A, Raikou M, Loggenberg K et al.: Cost-effectiveness of population screening for BRCA mutations in Ashkenazi Jewish women compared with family history-based testing. J Natl Cancer Inst 2015, 107.

    Manchanda R, Loggenberg K, Sanderson S, Burnell M, Wardle J, Gessler S et al.: Population testing for cancer predisposing BRCA1/BRCA2 mutations in the Ashkenazi-Jewish community: A randomized controlled trial. J Natl Cancer Inst 2015, 107

    Bowel Cancer Screening: A Snoozing Problem?

    By Siu Hing ( Siu Hing ) Lo, on 1 December 2014

    In my previous blog post, I concluded that although a large majority of people take part in bowel cancer screening at least once, few do so consistently. Our latest research findings suggest that procrastination could explain this inconsistent behaviour.

    The home-based stool test for bowel cancer screening is offered every two years to all adults living in England aged 60 to 74. Regular participation is important because the current screening test, the guaiac Faecal Occult Blood test, is not very sensitive (Soares-Weiser et al. 2007). Only regular participation has been proven to reduce bowel cancer mortality in randomised controlled trials (Hewitson et al., 2008).

    Our latest study showed that returning the screening test kit after 28 days reduces the likelihood of screening participation in a subsequent invitation round. This effect was even observed among people who had taken part twice in a row. This suggests that even those with a proven track record are at risk of dropping out of the screening programme if they have a history of “procrastination”.

    If someone has not returned the test kit after 28 days, the screening programme automatically sends them a reminder. Roughly one third of first-time participants are sent a reminder. However, if they fail to undertake timely action again, no further reminders are sent.

    Perhaps we could think of screening procrastinators as “snooze button” users. Relying on the alarm clock to remind them repeatedly to get up, snoozers may eventually get caught out and truly oversleep. Unfortunately, we do not know for sure. What our study does not tell us is why people “procrastinate”.

    One possibility is that procrastinators find the test particularly onerous. Another – although not necessarily mutually-exclusive – potential explanation is that they are procrastinators in other areas of their lives as well. Further study of the causes that underlie procrastinators to drop out of bowel cancer screening could help inform interventions to increase screening participation.

    References

    Hewitson P, Glasziou P, Watson E, Towler B, Irwig L (2008) Cochrane systematic review of colorectal cancer screening using the fecal occult blood test (Hemoccult): An update. Am J Gastroenterol 103: 1541-1549, doi: 10.1111/j.1572-0241.2008.01875.x.

    Lo, S.H., Halloran, S., Snowball, J., Seaman, H., Wardle, J. & C. von Wagner (2014), Colorectal cancer screening uptake over three biennial invitation rounds in the English Bowel Cancer Screening Programme, Gut, Published Online First: 7th May 2014, doi:10.1136/gutjnl-2013-306144.

    Lo, S.H., Halloran, S., Snowball, J., Seaman, H., Wardle, J. & C. von Wagner (2014), Predictors of repeat participation in the NHS Bowel Cancer Screening Programme, British Journal of Cancer, in press.

    Soares-Weiser K., Burch J., Duffy S., St John J., Smith S., Westwood M., & J. Kleijnen (2007), Diagnostic Accuracy And Cost-Effectiveness Of Faecal Occult Blood Tests (FOBT) Used In Screening For Colorectal Cancer: a Systematic Review, York, United Kingdom: University of York.

    Maintaining health literacy through being web-savvy and socially active

    By Lindsay C Kobayashi, on 26 November 2014

    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

    A new era for cancer prevention

    By Samuel Smith, on 13 November 2014

    In June 2013 you may have seen headlines about two new drugs that are going to be offered to women who are at an increased risk of breast cancer. These drugs, known as Tamoxifen and Raloxifene, were previously used by women who had been diagnosed with breast cancer as a way of reducing recurrence of the disease. Recent data suggest that these medications may be beneficial for women with a strong family history. As a result, the National Institute for Health and Care Excellence (NICE) has recommended that they be offered to women who meet a certain level of risk based on their family history and other factors.

    Taking medications or any other natural, synthetic or biological agent to prevent cancer is known as ‘chemoprevention’. The NICE announcement was particularly exciting because it is the first time they have endorsed a medication for the primary prevention of cancer. While this raises a number of clinical issues, I have recently been given funding from Cancer Research UK to investigate what women think of breast cancer chemoprevention. Women who have been assessed by a specialist and told they are at an increased risk of breast cancer have a number of options, including taking Tamoxifen or Raloxifine. Alternatives include doing nothing, having routine surveillance by mammography or surgical intervention to remove the breasts and/or ovaries. You may have seen newspaper coverage of Angelina Jolie making a similar decision and here is her thoughtful piece on the issue. This decision is challenging, and there is no right or wrong answer. Instead, it must be based on women’s full understanding of the risks and benefits, as well as the values they assign to these factors.

    In a joint collaboration between the Health Behaviour Research Centre, and the Centre for Cancer Prevention and funded by Cancer Research UK, I will be recruiting and following a group of women who have been asked to decide between these options. This study (known as the ENGAGE study) will help to identify how women are currently making these decisions, and what can be done to support them during this difficult process. Data from a number of questionnaires will be collected and after 1 year we will report on what decisions women have made and what their experience has been.

    Chemoprevention is an exciting new area of research, but understanding the public’s opinion of it is vital if it is to be implemented effectively. So, if you’d like offer an opinion please feel free to leave a comment on our message board or contact me directly via e-mail (samuel.smith@ucl.ac.uk).

    Sam (samuel.smith@ucl.ac.uk)

    The role of HPV in head and neck cancer: It’s time to talk.

    By Rachael Dodd, on 5 November 2014

    Most well-known for its link with cervical cancer, human papillomavirus (HPV) has been linked to a number of other cancers including some cancers of the head and neck.  The number of HPV-related head and neck cancers diagnosed in the UK has doubled in recent years so health professionals in this field are finding themselves having to talk to their patients about HPV.
    Health professionals have an ethical obligation to ensure accuracy and transparency when explaining to patients that their cancer has been caused by HPV. But because HPV is sexually transmitted, discussing it could be a potential challenge for health professionals with little experience of discussing sex with their patients. In order to understand the experiences and challenges of talking to head and neck cancer patients about HPV, we interviewed fifteen health professionals (surgeons, oncologists, specialist nurses and allied health professionals) working in the field.
    Most of the health professionals we interviewed did talk to their patients about HPV, but there were mixed views about the benefits of this. Some felt it was useful for patients to know the cause of their cancer, particularly because HPV-related head and neck cancer has a better prognosis than the more ‘traditional’ tobacco and alcohol-related cancers. Others felt that as patients’ HPV status would not affect their treatment, such discussions were unnecessary.
    Health professionals discussed how HPV-related head and neck cancer patients can have different rehabilitation needs to those with head and neck cancer that’s caused by alcohol and tobacco because they tend to be younger and in better health. For example, one speech and language therapist said: ‘we’ve got a longer period of survivorship for younger people who are still actively employed and so their functional rehabilitation becomes a bigger issue’. The impact that an HPV-related diagnosis could have on relationships was also considered important.
    Participants identified some key messages about HPV that they felt were important to include in their discussions with patients. Explaining to patients that HPV is very common and linked with normal sexual behaviour helped to normalise the infection. Drawing parallels with cervical cancer and mentioning the HPV vaccination had also been found to be helpful.
    The range of experiences discussed suggests a need for clinical guidance to ensure that patients are receiving consistent messages. In line with a previous study of dentists in the United States, most of the health professionals we interviewed felt that additional training could help them improve their knowledge about HPV and their communication with patients. Further research is needed with patients to explore what being diagnosed with HPV-related head and neck cancer means for them.

    Article link:
    Dodd R.H; Marlow L. and Waller J. Discussing a diagnosis of human papillomavirus oropharyngeal cancer with patients: a qualitative study of health professionals Head and Neck
    http://onlinelibrary.wiley.com/doi/10.1002/hed.23916/pdf

    To achieve weight loss, fat shaming is not the answer

    By Susanne Meisel, on 11 September 2014

    Negative attitudes towards obese individuals therefore remain one of the ‘last socially acceptable forms of prejudice’ . One has only to glance at the ‘comments’ section of media reports discussing obesity to realise that obese people are openly subjected to labelling and stereotyping, and some outright abusive attacks. Unfortunately, stereotypes of the overweight and obese are held across all segments of society, including those working in health and social care .

    Despite solid evidence (and frequent discussion on this blog) showing conclusively that whole host of factors contribute to excessive weight gain,currently, responsibility for maintaining a healthy weight rests solely with the individual. Therefore, people may think that stigmatising those who ‘refuse’ to conform to the ‘societal imperative’ is justified . Some may go even further and claim that stigmatising overweight and obese people would encourage them to lose weight. However, when our researchers looked at the scientific literature surrounding stigma and weight loss, there was little evidence showing whether this was actually true.

    To find out whether weight and the experience of stigma are related in some way, researchers from our department looked at data from 2,944 UK adults over four years who participated in the English Longitudinal Study of Ageing (ELSA), a study of adults aged 50 or older. Participants are weighed and measured every four years, and asked questions on a range of topics every two years.

    To assess stigma, participants were asked how often they encounter five discriminatory situations: ‘In your day-to-day life, how often have any of the following things happened to you: 1) You are treated with less respect or courtesy; 2) you receive poorer service than other people in restaurants and stores; 3) people act as if they think you are not clever; 4) you are threatened or harassed; 5) you receive poorer service or treatment than other people from doctors or hospitals. Responses ranged from ‘never’ to ‘almost every day’. Participants who reported discrimination in any of the situations were asked to indicate the reason(s) they attributed their experience to from a list of options including weight, age, gender, and race. The researchers considered participants who attributed experiences of discrimination to their weight as cases of perceived weight discrimination. Because many participants reported never experiencing discrimination, the researchers divided responses to indicate whether or not respondents had ever experienced discrimination in any domain (never vs. all other options).

    Of the 2,944 eligible participants in the study, 5% reported weight discrimination. This ranged from less than 1% of those in the ‘normal weight’ category to 36% of those classified as ‘‘morbidly obese’. Men and women reported similar levels of weight discrimination.

    However, those who reported experiencing weight discrimination gained more weight than those who did not over the 4-year period. On average, after taking baseline differences in BMI, gender, age and personal wealth into account, people who reported weight discrimination gained 0.95kg whereas those who did not lost 0.71kg, a difference of 1.66kg.

    However, because this study looked only at the relationship of perceived stigma and weight gain, we cannot conclude that stigma caused weight gain – it could also be that weight gain increased perceived stigma, or that a third factor influenced both weight gain and stigma. To conclusively establish whether stigma indeed causes weight gain, we would have to run a controlled experiment with at least two groups of similarly overweight people, where one group is subjected to stigma over a period of time, and the other one is not, and then measure their weight at the end of the study. Of course, such an experiment would be highly unethical, given the damaging effects of stigma on psychological health. Another limitation of this study was that discrimination was assessed two years after the initial weight measurements and two years before the final measurements, although the researchers controlled statistically for this.

    However, regardless of its limitations, this study showed that weight discrimination is definitely not associated with weight loss. This means that there was no evidence for the idea that stigmatising overweight and obese individuals would motivate them to lose weight. in many cases, it may even hinder weight loss. Therefore, we should work towards removing prejudice and blame from weight loss advice and should focus on positively supporting those who are trying to lose weight. One way may be to teach active coping strategies and increasing acceptance-based elements into weight loss programmes because this has had some promising effects. Furthermore, we will need to continue highlighting the complex causes of obesity rather than relying on simplistic representations, and increase work to acknowledge and address weight-related stigma, to make the ‘last socially acceptable form of prejudice’ unacceptable.

     

    Article link:

    Jackson, S. E., Beeken, R. J., & Wardle, J. (2014). Perceived weight discrimination and changes in weight, waist circumference, and weight status. Obesity, n/a.  http://onlinelibrary.wiley.com/doi/10.1002/oby.20891/full

     

    Can catching cancer early ever be a bad thing?

    By Susanne Meisel, on 31 August 2014

    The chance of surviving cancer is usually much better if it is found early; ideally before a person has any symptoms. One way to achieve earlier detection of cancer is by screening.

    Breast cancer screening is one of the three NHS cancer screening programmes and is currently offered to all women aged 50 to 70 in the UK. This is done using mammography, which can detect cancers that are too small to see or feel.

    Breast cancer screening is a form of secondary cancer prevention because it does not prevent breast cancer from happening in the first place; it only helps to find it earlier. Primary breast cancer prevention, on the other hand, is everything a person does to try and prevent breast cancer from ever developing; for example by not smoking, keeping alcohol within sensible limits and keeping a healthy weight. Although doing those things does not guarantee that a person will never get breast cancer, there is good evidence that it will reduce the chance.

    However, any type of cancer screening not only has benefits, but also the potential to cause harm. An independent expert panel was asked not long ago to weigh up the benefits and harms of breast screening. They concluded that on balance, breast screening has more benefits than harms. Therefore, it is still recommended.

    One particular risk of harm that the breast screening panel identified was overdetection (sometimes known as overdiagnosis). Overdetection happens when a cancer is picked up by a mammogram which would have never caused a problem during a woman’s lifetime – either because it was slow-growing, or because she would have died of something else before the cancer became a problem. However, because it is currently impossible to tell whether a cancer is ‘dangerous’ and fast-growing, or won’t cause further problems because it’s growing only very slowly, all cancers are treated as ‘dangerous’. This means that some women will have treatment that is very invasive and distressing (for example breast surgery or chemotherapy) when actually the cancer would not have caused them any harm. Currently, it is estimated that for every life saved by screening, three cancers are detected that would have not caused any problems.

    Whether or not to attend breast cancer screening is a personal choice .
    However, for women to make an informed choice about breast screening, they need to know about all the benefits and harms, including the risk of overdetection.

    Our researchers carried out a survey with 2,272 women from the general population to find out whether women knew about overdetection, and whether getting some information on it would influence their decision to go for breast screening. Therefore, they asked women about screening intentions, before and after giving them information on overdetection. Women were told about the problem of treating cancers that never would have caused harm, and that for every woman who has her life saved by breast screening, three will have treatment for a cancer that would never have become life-threatening. The researchers thought that younger women (<47) who were not yet eligible for screening would have lower intentions to go for screening after hearing some information about overdetection than women who were already eligible for breast screening, because the latter may already have made up their minds.

    The results showed that about half of the women (53%) were already aware of overdetection, with greater awareness among women who were already eligible for screening. However, even after getting some information on overdetection, only about two thirds of the sample (64%) felt that they understood what the concept meant, and a similar number (57%) understood that women who go for breast screening are more likely to be diagnosed with breast cancer than women who don’t. Interestingly, only a small number of women (7%) showed a decrease in screening intentions after receiving information on overdetection. As predicted by the researchers, a greater number of these women were not yet eligible for breast screening.

    These findings suggest that the concept of overdetection may be difficult to understand for some women, and that brief information may not be enough to help them make an informed choice. However, one limitation of this study was that women had very little time to take in the information that was given to them. Perhaps understanding would have improved if women had had more time to process what it meant. Alternatively, it is possible that women took a ‘better safe than sorry’ approach to overdetection, which has been suggested by findings from some focus groups that our researchers did with 40 women.

    Future work will help to understand how best to communicate the benefits and harms about cancer screening to different groups of people, so that they can make a truly informed choice about whether or not to participate.

     

    References:

    Waller, J et al. A survey study of women’s responses to information about overdiagnosis in breast cancer screening in Britain (2014) British Journal of Cancer. doi: 10.1038/bjc.2014.482

    Waller J, Douglas E,Whitaker KL, et al Women’s responses to information about overdiagnosis in the UK breast cancer screening programme:a qualitative study. BMJOpen 2013;3

    http://bmjopen.bmj.com/content/3/4/e002703.full.pdf+html

     

    The darker side of weight loss – why it is important to pay attention to mood changes when losing weight

    By Susanne Meisel, on 7 August 2014

    The increasing prevalence of weight-related diseases have led health organisations world-wide to advise overweight and obese people to lose weight.  Indeed, the notion that weight loss is generally ‘a Good Thing’ for people who are overweight (BMI 25-30) or obese (BMI ≥30) seems to have been taken on board by the wider society.  Rightly or wrongly, magazines are full of stories, tips and tricks on how to achieve the ‘perfect’ weight, and the diet industry’s worth is estimated to be several billion pounds.   In a recent study of over 9000 overweight and obese adults, over 60% reported that they were ‘trying to lose weight’.

    Undoubtedly, even losing relatively small amounts of weight (5% of body weight) will reduce the risk of many obesity-related conditions and diseases, most notably, diabetes, heart disease and stroke.  There are also many reports that weight loss has psychological benefits.  Most commonly, people said that they had improved energy levels, and felt less depressed after losing weight.

    However, when researchers from our department looked more closely at the evidence for improvements in depression, it became clear that most of these reports came from people in weight loss trials.  Interestingly, mood improvements often occurred before any weight was lost in these studies, and were not related to the actual amount of weight lost.  This suggests that factors other than weight loss per se may have been responsible for the reported mood improvements.  One explanation is that personal contact (which is a central part of most weight loss trials) may have been responsible for people feeling less depressed by providing support during the weight loss process.  Furthermore, it is likely that people who take part in weight loss trials are very different from the ‘average’ weight loser in the population, so we cannot say that findings from trials will also be true for most people in the UK.

    When our researchers looked for studies that used big samples that were representative of the population, they found results from only two studies, the Health and Retirement study, and the Health ABC study.  Curiously, both of these reported slight increases in depressive symptoms in people who lost weight.  However, because these studies also included healthy weight people, and did not look at whether people wanted to lose weight, or lost weight because they got ill during the study period or had significant stress in their lives (which is often related to both weight loss and depression) it was difficult to determine what the reason behind this puzzling finding was.

    Therefore, our researchers set out to explore the relationship between weight loss and depressed mood in the English Longitudinal Study of Ageing (ELSA), a large cohort, representative of the UK population that has been going on for over 12 years.  The good thing about ELSA is that it includes lots of measures on all sorts of topics, so that it is very unlikely that people take part because they feel strongly about a certain issue, and it weighs and measures all of its participants every four years so does not rely on self-reported data.

    For this particular analysis, the researchers decided to only look at overweight and obese people because these are the people who might be advised to lose weight; a sample of 1979 people.  They also used data telling them about participants’ intention to lose weight, their mood (using an established scale for depressive symptoms), any life stressors or illnesses that occurred during the study period, and blood pressure and triglyceride levels (which were used to check that people benefitted physically from weight loss in the expected way).

    The results showed that people derived typical physical benefits from weight loss, with blood pressure and blood test results improving over a period of four years.  However, just like in the other two studies, our researchers found that overweight and obese people who lost at least 5% of their body weight (which is recommended) over four years were nearly twice as likely to be depressed than people who were weight stable, even when taking life stress and onset of illness into account.

    However, this study was not able to determine cause and effect, so it is impossible to say whether weight loss caused depressed mood, or whether depressed mood caused weight loss or a third factor that was not measured caused both weight loss and depression.  It is important to investigate these findings further in order to establish why these results were observed, and why they differ so greatly from those reported in weight loss trials; especially since there are so few other studies out there at the moment that could hint at an explanation.

    People often think that losing weight will make them happier, but these findings suggest that weight loss may not always be a positive experience.  In fact, the psychological ‘costs’ of weight loss might explain why many who do successfully lose weight struggle to keep the weight off in the long term.  However, this is not to say that people should not attempt to lose weight – after all, people in the study got physically healthier.  Rather, it seems important that service providers are mindful of the possibility that weight loss may worsen mood, and to perhaps include an assessment of mood in their weight loss programmes.  It may also be sensible for anyone trying to lose weight to be aware of any on-going mood changes and to seek psychological support from health professionals or even friends and family if they begin to struggle.

    Article reference:

    Psychological Changes following Weight Loss in Overweight and Obese Adults: A Prospective Cohort Study

    Jackson SE, Steptoe A, Beeken RJ, Kivimaki M, Wardle J (2014) Psychological Changes following Weight Loss in Overweight and Obese Adults: A Prospective Cohort Study. PLoS ONE 9(8): e104552. doi: 10.1371/journal.pone.0104552