‘Health Chatter’: Research Department of Behavioural Science and Health Blog
  • Pages

  • Our Twitter Feed

  • A A A

    Congratulations to Dr Jo Waller

    By Alice Forster, on 7 November 2016

    Alice Forster and Laura Marlow

    Today at the NCRI Cancer Conference in Liverpool, the inaugural Jane Wardle prize was awarded to our very own Dr Jo Waller to recognise her world-leading contribution in cervical cancer prevention. The prize was set up by Cancer Research UK in memory of Professor Jane Wardle who died last year. Jo has been at the Health Behaviour Research Centre for 15 years and was herself mentored by Jane Wardle. In this blog we highlight some of Jo’s key research in cervical cancer prevention during this time.

     

    In 2005, Jo completed a PhD exploring psychosocial issues surrounding the viral aetiology of cervical cancer. These early studies explored the emotional and social consequences of a HPV diagnosis and how women make sense of a HPV positive result at cervical screening. The findings highlighted extremely low awareness of HPV and poor understanding about how cervical cancer develops. This work also showed the importance of providing good information to ensure minimal anxiety when receiving a HPV positive result at screening and to avoid stigmatising cervical cancer.

     

    Jo and her colleagues went on to explore psychosocial issues surrounding HPV vaccination before and after its introduction in 2008. This research helped identify the most appropriate age for the vaccine and contributed to the content of the information materials provided. In addition, this work offered reassurance that vaccination against a sexually transmitted infection (the HPV vaccine) did not result in changes to girls’ sexual behaviour as some media reports had suggested. Jo’s work has also explored why certain sub-groups of the population, such as young women and ethnic minority women are less likely to participate in cervical screening.

     

    In 2014, Jo was awarded a prestigious Cancer Research UK Career Development Fellowship to continue her research in cervical cancer prevention. Jo now formally manages a team of researchers and her current research activities include understanding non-participation in cervical cancer screening and HPV vaccination, developing interventions to improve uptake of these cervical cancer control interventions, and evaluating the psychological impact of primary HPV testing within cervical screening.

     

    Jo has also been involved in numerous other bodies of work over the last 10 years including development of the Cancer Awareness Measure and studies exploring informed choice about screening. She is also an informal mentor to many students and colleagues. We are all very proud of Jo’s achievement today. Well done Jo!

     

    You can read more about our current work in cervical cancer prevention on our website.

    Could a leaflet help catch cancer earlier?

    By Jo Waller, on 4 May 2016

    We’ve written here before about the difficulty of recognising symptoms that could be signs of cancer, and knowing when it’s appropriate to go to the doctor about them. There’s lots of evidence that cancer is more treatable if it’s found at an earlier stage, but we know less about effective ways of encouraging people to seek help appropriately.

    Encouraging people to seek help

    Our new study tried to do just this. We focused on gynaecological cancers – that is ovarian, cervical, endometrial (womb/uterine), vaginal and vulval cancers which together affect over 20,000 women a year in the UK. We know from previous research that some of the things that stop people going to the doctor with symptoms are:

    1) Not knowing that the symptom could be a sign of something serious
    2) Worry about wasting the doctor’s time
    3) Embarrassment about discussing or exposing intimate parts of the body
    4) Worry about what the doctor might find

    So we designed an information leaflet that addressed some of these issues. It provided details about possible symptoms of gynaecological cancer and a checklist to help women record their symptoms and make a plan to visit their GP. It reassured women that their doctor would be happy to see them, and that the symptoms were unlikely to be serious. It addressed the issue of embarrassment and reminded women they could ask to see a female doctor.

     

    In this study Leaflet 1, we uLeaflet 2sed questionnaires to measure the impact of the leaflet in the short-term. We asked 464 women about their symptom knowledge, the things that might put them off going to the doctor if they had gynaecological symptoms, and how quickly they thought they would seek help for a range of symptoms. We also asked about how anxious they were feeling right now, so we could see if the leaflet raised anxiety levels. Women then spent some time reading the leaflet before filling in another questionnaire.

    What did we find?

    After reading the leaflet, most women said they would seek help more quickly if they noticed one of the symptoms. In particular, we reduced the number of women who said they would never seek help for vague symptoms like bloating and feeling full quickly, which can be signs of ovarian cancer. Women reported fewer barriers to visiting their GP, and greater knowledge about possible symptoms of gynaecological cancer. There was no evidence that the leaflet made women feel anxious.

    What next?

    These findings are very encouraging, and suggest that a leaflet may be an effective way of promoting prompt help-seeking for these symptoms. But it’s also important to remember that it was an experimental study – women read the leaflet under controlled conditions, so it doesn’t tell us what impact the leaflet would have in a real-world setting where women might be sent it in the post, or handed it at their GP surgery. Under these circumstances, they might not even read it.

    In addition, we could only measure women’s anticipated help-seeking, and we can’t be sure what they would really do if they had these symptoms. Even when people intend to seek help, life often gets in the way, other things take priority, and people don’t get round to making an appointment.

    The next step will be to see what happens when we actually send the leaflet to women – will more of them seek help and, ultimately, will more cancers be diagnosed at an earlier stage when treatment is more effective? We hope to answer these questions in our future work.

    Can the internet help the public understand ‘overdiagnosis’ in breast cancer screening?

    By Alex Ghanouni, on 20 April 2016

    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.

    What does the UK public understand by the term ‘overdiagnosis’?

    By Alex Ghanouni, on 14 April 2016

    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.

    Delays in the diagnosis of cancer: an issue on both sides of the Atlantic

    By Minjoung M Koo, on 18 September 2015

    By Monica Koo and Yoryos Lyratzopoulos

    In recent years, there has been a lot of attention on the delays in the diagnosis of cancer in England. Evidence from the International Cancer Benchmarking Partnership (ICBP) has indicated that delays in diagnosis were contributing to poorer cancer survival in England compared to other countries. However, it would be wrong to assume that delays in diagnosis of cancer were unique to countries with a strong primary care system such as England.

    We recently wrote an editorial in Cancer Epidemiology on this very topic, commenting on a new population-based study looking at delays in the diagnosis (and treatment) of lung cancer in elderly patients in the US. The study was based on linked routine healthcare data (SEER-Medicare to be specific) collected on nearly 50,000 US patients. There are a few key findings that we highlight in the editorial:

    • The median diagnostic interval (the time between when a patient first presents with symptoms and diagnosis) was around 180 days (almost 6 months). This means that more than half of the patients in this study had a diagnostic interval of longer than 6 months, which is a pretty alarming finding. Similar findings have been published in England recently, showing how difficult it can be to detect and diagnose lung cancer.
    • Older patients had longer median diagnostic intervals than younger patients, and women had longer diagnostic intervals than men. Again, similar patterns have been described before in the UK, but the inequalities found by this study were particularly large and clearly further research is needed in this area.
    • There were also delays from diagnosis to treatment, which were much shorter than the diagnostic interval (27 and 18 days for patients with non-small cell and small cell lung cancer respectively). Patient characteristics didn’t have much effect on the length of the treatment interval, compared to the diagnostic interval. In other words, once a diagnosis of lung cancer was made, the patient’s age, sex, race, and comorbidity status (whether they had other health conditions) didn’t influence their time to treatment much.

    Relatedly, specialist investigations are increasingly being used to inform treatment options, including PET-CT imaging and biomarker profiling. Unfortunately such advances in personalising cancer care also have the potential to delay the start of treatment. Although challenging, this may be seen as an opportunity to streamline and integrate cancer care pathways and services.

    Overall, the findings of the US study add to the growing body of evidence on diagnostic delays in cancer from the UK and other countries, clearly indicating that this is a global problem that transcends countries and healthcare systems. Building on the shared learning generated by the ICBP, future international efforts in cancer outcomes research should aim to include US patients in order to bring further insights into the cause of such delays. By first asking “why” the delays occur, we can then turn to the “how” and “what” we can do about these universal problems.

    Our editorial is open access (freely available online) and is available at: http://dx.doi.org/10.1016/j.canep.2015.08.008

    Timely diagnosis of cancer matters for patient experience

    By Georgios Lyratzopoulos, on 2 August 2015

     

    We are delighted to host a blog on a recent collaborative paper, written by guest blogger Silvia Mendonca, Statistician, Cambridge Centre for Health Services Reserach, University of Cambridge.

    ================================================================================

    By Silvia Mendonca

    In our recent paper we studied how pre-diagnosis experience affects subsequent care experience in cancer patients (1). Our findings suggest that patients who experienced more pre-referral consultations in primary care are more likely to be less satisfied with their care. As perhaps could have been expected, the associations found were stronger for questions involving primary care compared to hospital care.

    We used data from over 70,000 patients who responded to the English Cancer Patient Experience Survey. In this survey patients report the number of pre-referral consultations with a GP, which was used as a marker of diagnostic delay. As different patients may vary in their tendency to give critical responses in general, we adjusted our analysis using a response tendency item. This item was calculated using mixed effects models and included responses to several questions from the survey.

    This work further supports efforts aimed at reducing time to diagnosis and amplifies previous evidence where patients expressed preference for having cancer investigations at low risk levels (2).

    The fact that associations found were stronger for aspects involving primary care has implications for follow up involving general practice.

    The research was covered by BMJ News and general media.

    1. Mendonca S.C. et al. Pre-referral general practitioner consultations and subsequent experience of cancer care: evidence from the English Cancer Patient Experience Survey. Eur J Cancer Care (Engl). 2015 Jul 30. doi: 10.1111/ecc.12353. [Epub ahead of print]

    2. Banks, J., Hollinghurst, S., Bigwood, L., Peters, T.J., Walter, F.M., Hamilton, W. Preferences for cancer investigation: A vignette-based study of primary-care attendees (2014) The Lancet Oncology, 15 (2), pp. 232-240.