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 , we used 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.

Type Jade Goody’s name into Google Images and you find an array of pictures from bouncy Big Brother star, through smiling but bald cancer patient, to pain-wracked dying woman.  Jade was diagnosed with cervical cancer in 2008 and died at the age of 27 just a few months later.  Her tragic story received unprecedented media attention and the general public were privy to the intimate details of the last months of her life.  In what has become known as the ‘Jade Effect’, her story had an extraordinary impact on women’s participation in cervical screening – we think about half a million extra women went for screening during the time of her illness.

As psychologists, we were interested in which women were influenced by Jade’s story and why.  To try to understand more about the Jade Effect, we did a survey of 890 women in England – all of them within the age range that are offered screening..  We collected information about women’s age and their social background and we asked them if they’d been affected by Jade’s story in their decisions about cervical screening.  The survey was done about 18 months after Jade’s death, so we asked women to think back over that time period.

The most interesting finding was that younger women were more influenced by Jade, and so were women who had children at a younger age, and who came from more deprived backgrounds.  So why do we think this is?  Well, Jade was 27 when she died, and it’s no secret that she had a hard childhood in Bermondsey – hers was a ‘rags to riches’ story.  She also had children young – in her early 20s.  So it seems possible that the women who were most influenced by her were those who could identify with her.  Perhaps there was a sense of ‘it could have been me’ – and this was the prompt they needed to go for screening.  Suddenly the stakes were raised and the barriers to having a smear test didn’t seem so important.  It’s also possible that some people are more affected by stories than facts.  The blanket media coverage and the emotional story of Jade’s illness probably affected people very differently compared with the kind of factual leaflets that are usually used in screening programmes.  It could be a case of heart vs. head, and perhaps as psychologists and health educators, we need to realise that stories, or ‘narratives’ as they’re sometimes known, can be a good way to get our message across.

Jo Waller (j.waller@ucl.ac.uk)

References

Lancucki L, Sasieni P, Patnick J, Day TJ, Vessey MP.  The impact of Jade Goody’s diagnosis and death on the NHS Cervical Screening Programme.   J Med Screen. 2012 Jun;19(2):89-93. doi: 10.1258/jms.2012.012028. Epub 2012 May 31.

Marlow LA, Sangha A, Patnick J, Waller J.  The Jade Goody Effect: whose cervical screening decisions were influenced by her story?   J Med Screen. 2012 Dec 27. [Epub ahead of print]