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Reviewing what we know: the psychological impact of HPV and oral cancer

By Rachael Dodd, on 21 March 2016

Human papillomavirus, or HPV as it’s more commonly known, is an infection that most sexually active people will get in their lifetime. We know that the high-risk types of HPV (e.g. HPV-16 and HPV-18) are often sexually transmitted and in some cases, albeit very few, it can lead to cancer if our bodies don’t get rid of it. It’s probably most well known as the cause of cervical cancer, as the HPV vaccination was introduced in 2008 and is available to all girls aged 12-13. But it has also been shown to cause other cancers, such as oral cancer, penile cancer and anal cancer.

When HPV was increasingly found to be the cause of cervical cancer, researchers looked into the psychological impact this could have on women being given this information. Research carried out with women taking part in HPV testing at cervical cancer screening has shown that the sexually transmitted nature of HPV can lead to women feeling stigma, anxiety, concern about their relationships and worry about telling others about their test result. Some women also reported a reduction in sexual enjoyment and frequency of sex. Because of the additional challenges faced by women with cervical HPV, people now recognise a need for some guidance on how best to discuss HPV with oral cancer patients.

Patients with HPV-related oral cancer are typically younger than those whose oral cancer has been caused by tobacco or alcohol. They tend to be white, male, married, educated and employed. The risk of getting a HPV-related oral cancer is higher if individuals have had a greater lifetime number of sexual and oral sex partners, due to greater exposure to HPV.

Unsurprisingly, research shows that a diagnosis of head and neck cancer causes psychological distress. Telling patients that they also have HPV could make them worry even more. We wanted to see what studies have been done in this area and what they have found.

We searched all the available literature to look at the psychological impact of being diagnosed with HPV-related oral cancer. In essence, there wasn’t much research out there. Ten research papers had looked at the psychological impact of being diagnosed with an HPV-related oral cancer. Seven of these measured quality of life (a patient’s ability to enjoy normal life activities) and they had varying results. Some research studies found that patients with HPV-related oral cancer had better quality of life than those diagnosed due to tobacco or alcohol, or that there was no difference between the two groups of patients. In one study which interviewed survivors, some patients felt stigma or shame associated with their diagnosis, because of the sexually transmitted nature of HPV.

We also looked at what different groups of people know about HPV and oral cancer, which varied considerably. As you would expect, knowledge was higher among medical professionals than members of the public. Knowledge was also higher among students who were studying medicine or dentistry than students who were not studying these subjects.

So far, there haven’t been many studies looking at the psychosocial impact of a diagnosis of HPV-related oral cancer and many people in the general public do not know about the link between HPV and oral cancer. The research studies looking at the psychological impact of HPV-related oral cancer, looked at this in patients, but this has led to further research being conducted with health professionals, patients and their partners. This research has explored their experiences of diagnosing/being diagnosed with HPV-related oral cancer, as well as the psychological impact of a diagnosis of HPV-related oral cancer.

Article link:

Dodd RH, Waller J, Marlow LAV. Human Papillomavirus and Head and Neck Cancer: Psychosocial Impact in Patients and Knowledge of the Link – A Systematic Review. Clinical Oncology 2016. http://dx.doi.org/10.1016/j.clon.2016.02.012

Making the headlines: HPV and oral cancer

By Rachael Dodd, on 7 March 2016

Many people are now quite familiar with the idea that a common virus – HPV or human papillomavirus – is linked with cervical cancer. Girls in school Year 8 are offered a vaccine to protect against it, and women are sometimes tested for HPV in the context of cervical screening. But fewer people know that HPV is also linked with oral cancer. In 2013, Michael Douglas talked to the media about the link between HPV and oral cancer in the context of his own diagnosis, and we were interested to see if this was used as an opportunity to raise public awareness of the link.

We know that media coverage can influence public awareness and perceptions about cancer. People have been shown to be more interested in disease prevention following a celebrity diagnosis. In the UK, the case of reality TV star Jade Goody (who died of cervical cancer in 2009) was associated with an increase in the number of women attending cervical screening. The NHS Be Clear on Cancer media campaigns have also been shown to be effective in increasing awareness of key symptoms for cancers and with more people seeking help from their GP.

Michael Douglas was interviewed by The Guardian in June 2013, and stated that his throat cancer was ‘caused by HPV which actually comes about by cunnilingus’. This statement was later retracted by his publicist, but not before it had received global media attention. This provided the media with a prime opportunity to discuss the link between HPV and oral cancer. But just what was discussed?

In our research paper we looked at UK newspaper articles mentioning HPV and oral cancer and found that there had been some coverage of the link going back as far as 2001, but there was a large peak in articles following Michael Douglas’ disclosure in June 2013. When we looked at the content of these articles, we found they covered Michael Douglas’ disclosure, some questioned if oral sex is risky and others discussed the vaccination of boys and general information about HPV.

Taking their cue from Douglas’ statement, a large number of articles mentioned oral sex as a cause of mouth cancer, with some reflecting on why HPV-related oral cancer might be twice as common in men as in women. An increase in the number of people having oral sex was suggested as a reason for the growing numbers of HPV-related oral cancers. It was also acknowledged that oral sex is a topic which could not have been discussed openly even recently.

Although most of the articles included some information around HPV and oral cancer, this often wasn’t detailed. Some articles communicated that the incidence of oral cancer is increasing, but less than 20 per cent of the articles communicated the important messages that 8/10 people will contract HPV in their lifetime and that HPV-related oral cancer has a better prognosis and survival.

There were also calls for boys to be vaccinated against HPV, as oral cancer affects both men and women. Campaigners believe giving boys the vaccination will help stop the ‘catastrophic rise’ in cancers. Some also viewed it as unethical to give the vaccination to girls and not to boys.

The UK media did regularly discuss HPV and oral cancer and the transmission of HPV via oral sex, but detailed information about HPV was generally lacking. Important messages to remember and communicate to others are that HPV is common, it is a result of normal sexual behaviour, and it has a better prognosis than oral cancers caused by smoking and alcohol.

Article link:

Dodd RH, Marlow LAV, Forster AS, Waller J. Print and online newspaper coverage of the link between HPV and oral cancer in the UK: a mixed-methods study. BMJ Open. 2016; 6:e008740.

http://bmjopen.bmj.com/content/6/2/e008740.full?keytype=ref&ijkey=a1QD2l1zZXkM6GX

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