Psychosocial impact of human papillomavirus‐related head and neck cancer on patients and their partners: A qualitative interview study

Abstract Objective Increasing numbers of patients face the psychosocial challenge of a diagnosis of oropharyngeal squamous cell carcinoma (OSCC) caused by human papillomavirus (HPV). We explored the psychosocial impact of an HPV‐OSCC diagnosis for patients and their partners. Methods In‐depth interviews were conducted with patients (n = 20) and a subset of their partners (n = 12), identified through medical records at two UK hospitals. Interviews were recorded, transcribed verbatim and analysed using thematic Framework Analysis. Results Only 12/20 patients interviewed (and five partners) were aware of their HPV status and the main analysis focused on this sub‐sample. In discussing the cause of their cancer, patients and their partners talked about not wanting to know; whether they disclosed the cause of their cancer to others; their reactions to being diagnosed with HPV; the prognosis information they were given and the questions they had about HPV. Most concerns were cancer‐related rather than HPV‐related, but some patients (n = 3) described feelings of embarrassment and perceived stigma about HPV. Conclusion Some patients and partners who are told HPV is the cause of their OSCC have questions about HPV and seek further information. Concerns and uncertainties about the sexually transmitted nature of HPV need to be addressed by health professionals.


| Materials
In-depth interviews followed a topic guide developed using the existing literature on patient experiences of HNC (Lang, France, Williams, Humphris, & Wells, 2013;Rapoport, Kreitler, Chaitchik, Algor, & Weissler, 1993) and previous qualitative work on HPV and cervical cancer (McCaffery et al., 2004;Waller, McCaffery, Nazroo, & Wardle, 2005). The topic guide (Table 1) was piloted with members of a participatory advisory group. The interviews began with an open question about the participant's experience of diagnosis. The rest of the interview was driven by responses to this question, but included questions about symptoms, diagnosis, psychosocial impact and information needs.

| Procedure
Patients were invited to participate through an information pack sent in the post. The information sheet in the pack informed patients that they were being recruited because of their diagnosis with HPV-related head and neck cancer. Patients were asked to return a short questionnaire, consent form and contact details form using a freepost envelope. A reminder was sent to non-responders after 3 weeks. Partners were sent an information pack in the post if patients had indicated on their consent form that they were willing for them to be contacted. Signed consent from partners was obtained on the day of the interview. Patients could participate regardless of whether they had a partner/participating partner.
In-depth interviews were carried out by RD, separately for patients and their partners. Interviews took place face-to-face (n = 29) or by telephone (n = 3) and lasted 26-84 min. They were recorded and transcribed verbatim. Emerging themes from the transcripts were noted simultaneously with carrying out the interviews. Once no new themes had emerged from three consecutive interviews, this indicated that saturation had been achieved. Data collection ceased at this point (Francis et al., 2010). Information about the subsite of patients' cancer, stage at diagnosis and treatment received was obtained from their medical records.

| Analysis
Data were coded thematically using NVivo 11 (QSR, 2015). RD, JW and AF read 10% of the transcripts each (n = 3) and developed codes independently. All coding was then discussed and disagreements were resolved before RD coded all of the transcripts. Once all the data had been coded in NVivo, it was summarised in a framework matrix with rows for participants and columns for themes.
Framework Analysis (Ritchie & Spencer, 1994) was chosen because it facilitates comparisons both within and between cases (Gale, Heath, Cameron, Rashid, & Redwood, 2013). Patients and partners were all treated as separate participant cases in a single framework. LM read a further 10% of the transcripts and checked her agreement against the coding framework.

| Sample characteristics
Out of 89 patients sent an information pack, 27 returned a consent form (30% response rate). Patients (n = 20) and partners (n = 12) were interviewed in September/October 2014 and between September and November 2015. Patients average time since diagnosis was 23 months (range 12-53 months). All were diagnosed with a primary tumour in the tonsil (n = 14) or base of tongue (n = 5) and all except one had late-stage disease (stage IV A to C). Patients had received surgery alone (n = 1), surgery with chemoradiation (n = 5), surgery with radiation (n = 5) or radiation only (n = 8). The medical records for one patient were not obtainable. The majority of patients were male, white British, married or cohabiting, and either employed full-time or retired (see Table 2).
Social grade, education and general health characteristics of the recruitment hospitals areas are shown in Table 3 (I Live Here UK,   2018).

| Overview
Data were examined to understand the psychosocial impact of being diagnosed with HPV-OSCC, looking at individual experiences for both the patient and their partner, and to explore how this varied between participants. Some initial reactions to being diagnosed with cancer included shock, panic, feeling destined for the diagnosis, thinking they were going to die, and feeling vulnerable and frightened. A small number of patients said the diagnosis was not a shock and a few of them felt like it was not happening to them.
Twelve patients in the sample were aware of the cause of their cancer being HPV, whereas the rest were not. The first theme explores causal beliefs across the whole sample and includes discussion of the information patients received from health professionals about the cause of their cancer. Subsequent themes focus on the data from the sub-sample of participants (n = 17; 12 patients, five partners) who were aware of the causal role played by HPV in their (or their partner's) cancer. These themes include: disclosing HPV to others, being diagnosed with HPV, prognosis, and questions and information about HPV.

| Causal beliefs
This theme distinguishes between patients who knew about HPV and those that did not. It covers the cause of patients' cancer and whether knowing the cause mattered. Almost a third of patients brought up the cause of their cancer and all others discussed it after being prompted by the researcher.

| HPV or virus
Some patients were told by their doctor that their cancer was caused by HPV (n = 6) or "by a virus" (n = 3). HPV was not always disclosed by a doctor as the cause of patients' cancer, with a couple of patients finding out after being approached by a member of a clinical trials team asking them about taking part in research and others remained unaware of the cause. HPV was not always accepted as the cause of cancer, with one partner, after a conversation with her friend who was a nurse, dismissing HPV as the cause of her partner's cancer.

Introduction
• Open with an introduction to self and the study, giving background and aims of the study-explain a university study, not the NHS • Tell the participant how long you expect the interview to take (between 30 min to an hour) and explain that the interview will be tape recorded • Explain about confidentiality, and the use of the data • Explain don't need to talk about anything uncomfortable with and no right/wrong answers • Any questions?

| Other and unknown cause
Some patients were not aware that HPV was the cause of their cancer despite having been tested for it. A patient whose brother-inlaw had also been diagnosed with HPV-OSCC specifically asked his doctor if he had HPV and was told he had "been unlucky" and that they had not found HPV. Another patient was angry that she had not been asked if she wanted a test for HPV.

| Cause doesn't matter
Nearly half of the patients said it did not matter what had caused their cancer, the most important thing was that they "got rid of it." The cause was also seen as something that could not be changed, "I can't go back and say I'll not do that" (Female, 66 years, patient) and that it did not affect the treatment. This partner expressed her relief that her husband's cancer was now gone: I don't care how it was caused. It was just that it's gone, we hope, you know.
(Female, 64 years, partner) and viewed what he had said as "not helpful" and there was a "sensationalist aspect" surrounding the sexually transmitted nature of HPV.

| Disclosing HPV as the cause to others
One partner described how she was happy telling people that her partner's cancer was caused by HPV before Michael Douglas said that "it's caused by oral sex." Well, to start with probably I was quite open telling people that [name of patient]'s cancer was caused by HPV but, after that, a bit more reluctant to discuss it.
Which is a shame, because I think that more people need to be aware of this, but it's difficult.

| Being diagnosed with HPV
This theme describes reactions to being diagnosed with HPV and preferences for being told about HPV.

| Reactions to being diagnosed with HPV
Patients' reactions to news of their cancer being caused by HPV were embarrassment, confusion, surprise, disappointment, shock and feeling unlucky. One patient described how she had "got a little bit of an issue still with it" and how her husband had "said something that made me feel really dirty" (Female, 42 years, patient).
One patient explained how she was embarrassed about the HPV aspect of her cancer, but how it feels less relevant now, with the cancer being most important, not the cause. Transmission of HPV to their partner was a concern for some patients and one of the partners decided to get tested privately for HPV.

| Prognosis of HPV-related cancers
Most of the patients given information about their prognosis were told that it was treatable, curable and they could expect to recover completely. The statistics given to patients ranged from 50% to 85% survival, with research showing higher survival rates for HPV-related diagnoses. Patients were reassured by the better prognosis given to HPV-related diagnoses and one patient described how he focused on the words "it's treatable" (Male, 56 years, patient).
One patient interpreted 80% survival as good, but then translated this into real life and how many do not survive, when he saw the radiotherapy masks lined up in the room.

| Questions and information about their cancer
The final theme related to information patients and their partners were given about HPV, their information demands and information seeking behaviours.

| Understanding of HPV
Participants were given different information about HPV. Most participants had never heard of HPV before they were diagnosed.
Those that were already aware of HPV tended to be women who had heard about it in the context of cervical cancer. Patients described discussing HPV in relation to cervical cancer and that "the HPV virus is in all of us." Some of the understanding about HPV that participants came away with following consultations were that it is "a virus," is "sexually transmitted," and "seems to affect anybody," "you could have had it for years," it is "the most contagious virus in the world," "it's on the increase" and is "becoming more and more common in all ages." Questions participants had about HPV included whether HPV is likely to travel around their body, "what's the chance of it coming back," "where has this [HPV] come from," "how's it taken so long to come through," have they still got HPV, "is it only sexually transmitted," how long have they been carrying HPV, what is the prognosis, will the treatment get rid of HPV and are their children more at risk of HPV.
One patient was reassured by a friend who works in a hospital, that people's beliefs about HPV being down to oral sex, "is their naivety." One patient believed that there were ways, other than oral sex, that HPV could be transmitted:

Searching for information about HPV
Although the internet was a popular source of information for participants, there was an understanding that searching the internet should be done with caution. A few did not want to look for any more information on the internet because they did not want to "panic" or read the wrong information: No. I never look on the Internet for anything like that ... it's no disrespect to anyone who put it on there, but they don't know like the professionals. Some participants felt the information currently available was not applicable to them. One patient noted that information about HPV seems to be "centred on teenagers" and was "either aimed at young people not contracting HPV or old people not getting cancer through HPV" (Female,41 years,patient). This particular patient felt like the information available about throat cancer was aimed at "that sort of age group-60 plus. And you are like, well, that's not me." There were a number of participants who were satisfied with the amount of information they had been given.

Keeping others informed
The importance of keeping the family informed about how the patient was, was recognised, but was described by one partner as "emotionally draining" (Female, 49 years, partner). Some partners found keeping people up-to-date was tiring, having to answer people's texts and phone calls. One partner adopted a strategy of emailing everyone to keep them updated at once.

| Need for more research
It was acknowledged that there was a need for more research about HPV-OSCC and that this was expected in a few years' time. Also, that further research may lead to different and "milder treatment" for HPV cancer, with this one partner hoping this would mean people "wouldn't have had to go through the dramatic treatment he did have to go through" (Female, 62 years, partner).

| D ISCUSS I ON
This study explored the psychosocial impact of being diagnosed with HPV-OSCC for patients and their partners. Although the medical records of all patients showed their tumour was HPV-positive, not all patients were aware of this. This suggests a need for better information provision to ensure greater understanding of HPV in this patient group. Reactions were mixed among those who knew their cancer was caused by HPV. Some participants felt embarrassed and felt that there was a stigma associated with HPV. Other participants were not concerned about the cause of their cancer and were more interested in knowing that survival rates for a diagnosis of HPV-OSCC were better than for non-HPV HNCs, suggesting concerns were more cancer-related than HPV-related. Patients and partners who were told that HPV was the cause of their cancer had a number of questions about HPV and some sought further information. Psychosocial effects were similar to those described in previous qualitative research with HNC patients (Baxi et al., 2012;De Boer et al., 1999;Lang et al., 2013), with patients describing times of depression, anxiety and denial, but also feelings of optimism and relief.
Participants' reactions to finding out that their HNC was caused by HPV varied. In line with findings from the cervical cancer literature, some patients reported feelings of embarrassment, confusion and concerns of transmission to their partner (McCaffery et al., 2006). Michael Douglas openly telling the media that "oral sex caused my cancer" (Shoard, 2013), was also noted to have added a "sensationalist aspect" to HPV-OSCC. One key message about HPV suggested in a previous study of health professionals (Dodd et al., 2016) (Milbury, Rosenthal, El-Naggar, & Badr, 2013). The internet was a popular source of information for participants, consistent with previous studies (Baxi et al., 2012) although patients did recognise that information on the internet is not always trustworthy and reliable. Searching for information also elicited differing reactions, with some patients finding the suggestion that oral HPV was transmitted through oral sex distressing, whereas other participants found information about the better prognosis, reassuring. Findings from a previous study with a similar population showed patients wanted more information about HPV and that "a cohesive, comprehensive, and trusted source would be valuable" (Baxi et al., 2012) (p5). These findings suggest that there is a need for information about HPV and HNC to be tailored for patients with HPV-OSCC and developed in line with evidence-based research. An information and support package for patients and their partners seeking information could help alleviate anxiety relating to HPV. There is a need for clear and consistent health messages aimed at diminishing stigma, fear and self-blame (Daley et al., 2010).
Previous research in the USA has confirmed that less than half of oncologists discuss HPV with their patients (Milbury et al., 2013) and this study showed just over half of patients were aware of their HPV diagnosis. As it is becoming more recognised that patients should be informed that HPV is the cause of their cancer (Shuman & Wolf, 2010), health professionals need to decide on the best time to discuss this with patients, with patients in this study suggesting the earlier the better.
Previous research with a small sample of male HPV-OSCC survivors also found that HPV was often overshadowed by the cancer itself and that patients were encouraged by the positive prognosis (Baxi et al., 2012). Similarly, a previous study showed that although information about HPV was seen as relevant, it was considered secondary to concerns about treatment of their cancer (Low et al., 2009).