By Anna Harvey (From the 2019 archive)
Splashed across billboards and the backs of buses; leaflet upon leaflet and multi-million television advert campaigns: hardly a day goes by without a clickbait article popping up on my social media feeds with the proclamation that some new household good has been linked with developing cancer. Cancer is the leading cause of death in people over one year old, representing 27% of all-cause mortality in the UK. Public facing cancer awareness campaigns, which aim to raise awareness of common cancer symptoms and when to seek help for them, have never been more important or higher profile.
Over 7000 new cases of ovarian cancer are diagnosed in the UK every year, with a five-year mortality rate of 54%. This is above the European average. If diagnosed in the earliest stages of the disease, 9 in 10 women diagnosed with ovarian cancer will be alive five years later, compared to just 5 in 100 women who are diagnosed at the latest stage. Women who are diagnosed with ovarian cancer at the later stages often have symptoms before they seek help; these symptoms can be non-specific and include bloating; abdominal and pelvic pain; and feeling full more quickly when eating. Consequently, there is significant impetus to improve early diagnosis rates in the UK.
Improving diagnosis is multifaceted, but involves engaging with both patients and professionals and allowing both groups the information they need to identify symptoms of cancer – patients so they can present to the GP, and GPs so they can make appropriately urgent referrals. Early diagnoses can be made only if both patient and healthcare professional are aware of symptoms and the potential implications of symptoms. A recent study found that public awareness, particularly of non-specific symptoms that might suggest ovarian cancer, was low. Evidence-based interventions were needed to increase awareness of ovarian cancer symptoms; one such intervention suggested was a public facing ovarian cancer awareness campaign.
Other large scale public health campaigns aiming to increase awareness of cancer symptoms have been successful. The national lung cancer campaign that ran in England between May and June 2014 increased public awareness of the non-specific symptom of consistent cough and its association with lung cancer, as well as increasing urgent GP referrals and lung cancer diagnoses.
“Early diagnoses can be made only if both patient and healthcare professional are aware of symptoms and the potential implications of symptoms”
There has yet to be a UK-wide public facing ovarian cancer campaign, though there have been several regional campaigns, and symptoms of ovarian cancer – particularly bloating – have also been included in the Department of Health’s ‘Be Clear On Cancer’ Abdominal Symptoms campaign which ran across the Midlands in 2017. A regional ovarian cancer symptom awareness campaign ran from February – March 2014 and drew attention to the symptom of consistent bloating and its association with ovarian cancer. Previous endeavours to improve early diagnosis of ovarian cancer have targeted GPs, with new clinical guidelines being introduced in Scotland in 2013; and a GP awareness campaign in Wales in 2016.
Due to the lack of large scale campaigns on ovarian cancer, there is more limited evidence to support the efficacy of ovarian cancer campaigns. The interim report for a regional awareness campaign pilot, which was part of the Be Clear on Cancer campaign, had positive results for raising awareness of bloating as a symptom of ovarian cancer; one in three claimed to have taken action following the campaign, the highest rates reported in any Be Clear On Cancer campaign. The campaign also increased the number of urgent GP referrals for gynaecological consult. However, there was no evidence that the campaign increased the actual numbers of women diagnosed with ovarian cancer. More work needs to be done to run and evaluate larger awareness campaigns to investigate their ability to increase rates of diagnosis and early diagnoses.
Crucially, though: is raising awareness of symptoms enough? A number of studies have focused on the emotional response to potential cancer symptoms and their relationship to seeking medical attention. Whitaker et al.’s 2016 study quantified the emotional responses to general cancer symptoms as ‘worry,’ a low level, ‘cognitive’ emotional response, and ‘fear,’ a more ‘visceral’ emotional response associated with avoidance behaviour [of thinking about cancer or coming into contact with doctors]. Interestingly, those who had a ‘worry’ response to potential cancer symptoms perceived themselves to be more likely to seek help for a symptom; those with a ‘fear’ response were more likely to display avoidant behaviour, even so far as to avoid cancer discourse altogether. This reflects long standing academic opinion that fear of being diagnosed with cancer delays presentation, even in people who are aware of symptoms. A 2005 meta-analysis found that fear of the implication of symptoms associated with cancer was second only to lack of awareness of symptoms linked with cancer in delaying help seeking.
If public facing ovarian cancer campaigns are increasing ‘fear,’ rather than ‘worry,’ this is counterproductive, as even if patients are aware of their symptoms – and the implications the symptoms may have – they will avoid seeking help. This outcome is, clearly, something that must be avoided. These nuances must be considered when proposing and creating public facing health campaigns.
Other factors have also been reported to delay help-seeking for symptoms associated with ovarian cancer; including socioeconomic barriers such as lack of transport to primary care services or being unable to take adequate time off work to attend primary care appointments. Analysing the nuances of the factors that delay help seeking are important in devising effective campaigns, as these campaigns must attempt to address these issues where possible. A 2005 study focusing on breast cancer symptoms found that fear of cancer treatment was a cause of delaying help-seeking. Consideration, then, should be given to ovarian cancer campaigns in order to effectively communicate symptom information in conjunction with messages designed to alleviate fear. Whilst public-facing campaigns may not have the capacity, nor be the most useful tool to bridge socioeconomic barriers to help seeking, with careful research and formulation they could go some way to ameliorating ‘fear’ responses in order to be as effective as possible.
“If public facing ovarian cancer campaigns are increasing ‘fear,’ rather than ‘worry,’ this is counterproductive…”
It is not enough for public facing ovarian cancer awareness programmes to simply present the symptoms of ovarian cancer. Raising awareness of symptoms is indeed a key component of the work needing to be done to ensure that women are presenting as soon as possible with the early symptoms of ovarian cancer, and evidence from campaigns focused on ovarian cancer suggests that these public facing campaigns are an effective way of raising awareness of symptoms. But the barriers to accessing timely care when confronted by these symptoms is more complex than at first glance. Evidence suggests that emotional responses to symptoms associated with ovarian cancer – that is, the fear these symptoms and their implications engender in people – is a key facet when considering delays in help-seeking, as well as simply being unaware of the symptoms. There is yet to be a large-scale public facing awareness campaign for ovarian cancer, so it is difficult to analyse whether these campaigns are effective enough to justify the expense and potential anxiety they may cause. It is important that any campaigns that are devised in the future are aware of the potentially fear-inducing messages they may inadvertently cause. That is not to say that public facing ovarian cancer campaigns are not a viable option for increasing awareness and early presentation – but that these campaigns must be carefully devised in order to alleviate fear responses which may prevent women from seeking help. The philosophy of evidence-based medicine must extend beyond animal experiments and drug trials, and into public health; including rigorous examination of public facing cancer campaigns and their efficacy.