Human Papillomavirus and Head and Neck Cancer: Psychosocial Impact in Patients and Knowledge of the Link - A Systematic Review.

Head and neck cancer (HNC) currently affects approximately 11 200 people in the UK, with an increasing proportion known to be caused by the human papillomavirus (HPV). We undertook a systematic review of studies measuring the psychosocial impact of HPV-related HNC and also studies measuring knowledge about the link between HPV and HNC among different populations. Searches were conducted on MEDLINE, Embase, PsycINFO, CINAHL Plus and Web of Science, with reference and forward citation searches also carried out on included studies. Studies were selected if they (i) were original peer-reviewed research (qualitative or quantitative), (ii) mentioned HPV and HNC, (iii) measured an aspect of the psychosocial impact of the diagnosis of HPV-related HNC as the dependent variable and/or (iv) measured knowledge of the association between HPV and HNC. In total, 51 papers met the inclusion criteria; 10 measuring psychosocial aspects and 41 measuring knowledge of the link between HPV and HNC. Quality of life in those with HPV-positive HNC was found to be higher, lower or equivalent to those with HPV-negative HNC. Longitudinal studies found quality of life in patients was at its lowest 2-3 months after diagnosis and some studies found quality of life almost returned to baseline levels after 12 months. Knowledge of the link between HPV and HNC was measured among different populations, with the lowest knowledge in the general population and highest in medical and dental professionals. Due to the limited studies carried out with patients measuring the psychosocial impact of a diagnosis of HPV-positive HNC, future work is needed with the partners of HPV-positive HNC patients and health professionals caring for these patients. The limited knowledge of the association between HPV and HNC among the general population also indicates the need for research to explore the information that these populations are receiving.

Understanding cervical screening non-attendance among ethnic minority women in England.

BACKGROUND: Women from Black, Asian and Minority Ethnic (BAME) backgrounds are less likely to attend cervical screening than White British women. This study explored sociodemographic and attitudinal correlates of cervical screening non-attendance among BAME women. METHODS: Women (30-60 years) were recruited from Indian, Pakistani, Bangladeshi, Caribbean, African and White British backgrounds (n=720). Participants completed structured interviews. RESULTS: BAME women were more likely to be non-attenders than white British women (44-71% vs 12%) and fell into two groups: the disengaged and the overdue. Migrating to the United Kingdom, speaking a language other than English and low education level were associated with being disengaged. Being overdue was associated with older age. Three attitudinal barriers were associated with being overdue for screening among BAME women: low perceived risk of cervical cancer due to sexual inactivity, belief that screening is unnecessary without symptoms and difficulty finding an appointment that fits in with other commitments. CONCLUSIONS: BAME non-attenders appear to fall into two groups, and interventions for these groups may need to be targeted and tailored accordingly. It is important to ensure that BAME women understand cancer screening is intended for asymptomatic women and those who have ceased sexual activity may still be at risk.

Awareness of cancer risk factors among ethnic minority groups in England.

OBJECTIVE: To explore awareness of cancer risk factors in ethnic minority men and women living in England. STUDY DESIGN: Cross-sectional survey. METHODS: Men and women were recruited from the six largest ethnic minority groups in the UK proportional to the population distribution: Indian (n = 467); Pakistani (n = 333); Bangladeshi (n = 126); Caribbean (n = 252); African (n = 216); and Chinese (n = 106). Participants responded to an open-ended question about cancer risk factors. Analyses were adjusted for age, gender, socio-economic class and language. RESULTS: The most commonly cited cancer risk factors were smoking (55%), diet (20%), genetics (20%), drinking alcohol (19%) and lifestyle (17%). On average, participants who were able to name cancer risk factors (91% of respondents) cited 2.13 factors. There were some differences between broad ethnic groups (Asian, Black and Chinese), but fewer differences within them (e.g. between Indian, Pakistani and Bangladeshi, or African and Caribbean). CONCLUSIONS: Awareness of risk factors (particularly diet and exercise) was lower in this sample than in previous population representative samples in the UK. Interventions aimed at raising awareness of cancer risk factors are likely to be beneficial across the whole ethnic minority population. Any ethnically targeted interventions should consider risk factor awareness levels as well as cancer risk.

HPV vaccination among ethnic minorities in the UK: knowledge, acceptability and attitudes.

BACKGROUND: Human papillomavirus (HPV) vaccination offers a unique opportunity for the primary prevention of cervical cancer. Studies suggest that knowledge and attitudes about the vaccine are likely to influence uptake. One limitation of most studies assessing HPV vaccine knowledge, attitudes and acceptability is their under representation of ethnic minorities. It is important to ensure that our understanding of HPV knowledge and attitudes include all ethnic groups in the UK. This article reviews research that has considered knowledge, acceptability and attitudes about HPV and the HPV vaccine among ethnic minorities in the UK. METHODS: Articles in Medline, CINAHL and PsycINFO (January 2000-March 2010) were searched. RESULTS: A total of 17 UK-based papers examined knowledge, attitudes or acceptability related to HPV vaccination in the 'lay' population (parents, adolescents or the general population as opposed to health professionals) and reported findings by ethnicity. CONCLUSION: Findings seem to suggest lower awareness of HPV and lower acceptability of the vaccination, which could be important if they are reflected in uptake. More research is needed with ethnic minority groups, particularly in the context of the vaccination programme.

Adolescents' beliefs about their parents' human papillomavirus vaccination decisions.

A significant minority of parents are concerned that human papillomavirus vaccination will affect sexual behaviour. We explored this issue with 162 adolescent girls. Most (between 90 and 92%) did not perceive a connection between parental consent to vaccination and parental authorisation for sexual activity, but a small percentage believed that vaccination consent implied that they were old enough to have sex (8%), or that it was okay for them to be sexually active (10%). The findings are broadly reassuring, but highlight the need for vaccination information materials to clarify why the vaccine is administered before sexual debut.

Ethnic differences in human papillomavirus awareness and vaccine acceptability.

BACKGROUND: Studies of human papillomavirus (HPV) awareness and HPV vaccine acceptability have included few non-white participants, making it difficult to explore ethnic differences. This study assessed HPV awareness and HPV vaccine acceptability in a sample of women representing the major UK ethnic minority groups. METHODS: A cross-sectional study design was used to assess awareness of HPV and acceptability of HPV vaccination. Participants were recruited using quota sampling to ensure adequate representation of ethnic minority women: Indian, Pakistani, Bangladeshi, Caribbean, African and Chinese women (n = 750). A comparison sample of white British women (n = 200) was also recruited. RESULTS: Awareness of HPV was lower among ethnic minority women than among white women (6-18% vs 39% in white women), and this was not explained by generational status or language spoken at home. In a subsample who were mothers (n = 601), ethnicity and religion were strongly associated with acceptability of HPV vaccination. Acceptability was highest among white mothers (63%) and lowest among South Asians (11-25%). Those from non-Christian religions were also less accepting of the vaccine (17-34%). The most common barriers to giving HPV vaccination were a need for more information, sex-related concerns and concern about side-effects. South Asian women were the most likely to cite sex-related concerns, and were also least likely to believe the vaccine would offer their daughters protection. CONCLUSION: These findings suggest some cultural barriers that could be addressed in tailored information aimed at ethnic minority groups. They also highlight the importance of recording ethnicity as part of HPV vaccine uptake data.

Public awareness that HPV is a risk factor for cervical cancer.

We assessed awareness of human papillomavirus (HPV) in a population sample of British women (n=1620) using similar questions to those in a survey in 2002. Only 2.5% cited HPV as the cause of cervical cancer without prompting; up from 0.9% in 2002. Public education about HPV is urgently needed.

The association between knowledge of HPV and feelings of stigma, shame and anxiety.

OBJECTIVES: To test the hypotheses that (1) women who know that human papillomavirus (HPV) is sexually transmitted will expect to experience higher levels of stigma, shame and anxiety if they test positive for the virus than women who are not aware of the mode of transmission and (2) women who are aware of the high prevalence of HPV infection will expect to experience lower levels of stigma, shame and anxiety than women who underestimate its prevalence. METHODS: A web-based survey in which information about HPV was manipulated to generate a 2 x 2 design (awareness that HPV is sexually transmitted v no awareness; awareness of the high prevalence of HPV v no awareness). Participants (n = 811) were female students. They were asked to imagine that they had tested positive for HPV. Outcome measures were expected stigma, shame and anxiety. RESULTS: Great differences were observed in emotional reactions to imagining testing HPV positive between the four groups based on knowledge of HPV. Knowledge of the prevalence was associated with lower levels of stigma, shame and anxiety. Knowledge that HPV is sexually transmitted was associated with higher levels of stigma and shame, but not anxiety. Women who knew that HPV is sexually transmitted but not that it is highly prevalent had the highest scores for stigma and shame. CONCLUSIONS: Raising public awareness of the sexually transmitted nature of HPV has the potential to increase women's feelings of stigma and shame if they test positive for the virus. However, our findings suggest that ensuring women's awareness of HPV being common may reduce these feelings and also reduce anxiety, perhaps by "normalising" the infection.