1

Introduction

An estimated 41,380 people will be diagnosed with head and neck cancers (HNC) in 2013 with approximately 7,890 dying from the disease . From an epidemiological standpoint, tobacco-related HNC is on the decline while human papillomavirus (HPV) related cases of HNC are on the rise . Current estimates would indicate that as many as a third of HNC cases are attributable to HPV, with variation depending upon tumor site . Ultimately, the medical approach to HNC is a dynamic process with evolving approaches to diagnosis, treatment, and related survival rates. However, while the overall picture has improved, not all have benefited equally. Despite concerted efforts over the past several decades, significant health disparities in ethnic minorities continue to exist within HNC . Unfortunately, the same pattern is emerging with regard to HPV, where young minority females are significantly less likely to initiate or undergo the full regimen of HPV vaccination than their white counterparts . Whether these disparities will change over time will likely be affected by multiple factors including public knowledge regarding HNC and access to care.

Regardless of how knowledge of HNC has been assessed, community-based samples consistently display inadequate understanding of HNC, behavioral factors associated with increased risk for HNC, and symptoms of HNC . This lack of knowledge is one of the theorized reasons why HNC frequently presents at an advanced stage and may be a contributing factor to ongoing disparities . Similar patterns are emerging with regard to HPV in relation to HNC. While research has begun to examine knowledge of HPV in relation to cervical cancer , minimal research has explored community dwelling adults’ knowledge of HPV in relation to HNC. One of the few studies providing preliminary data on public awareness of HPV’s relationship to HNC was Riley et al. . In their study, they assessed a diverse sample of rural Floridians and found that only 40.2% correctly identified HPV as a risk factor for HNC. As the authors pointed out, environmental context (such as rural, urban, and suburban locales) has been associated with different levels of access to care and should be considered in evaluating HNC awareness .

Another variable likely to affect health outcomes is health literacy. The accepted definition of health literacy is “the degree to which individuals have the capacity to obtain, process and understand basic health information needed to make appropriate health decisions and services needed to prevent or treat illness” . Limited health literacy has been associated with a number of negative outcomes including, but not limited to, reduced access to care, greater healthcare costs, and increased mortality in older populations . Preliminary evidence suggests health literacy may be a moderating variable of racial/ethnic disparities and health outcomes . As such, there has been a call for research to further understand health outcomes in minority populations taking into account health literacy .

The purpose of this study is to expand upon the previous literature by evaluating health literacy and current knowledge regarding HPV in a diverse sample across urban and suburban sites. Also, as behavioral history/factors are known contributors to the transmission of HPV and development of HNC, we will also examine health risk behaviors (tobacco, alcohol, and sexual) in relation to HPV/HNC across urban and suburban populations.

2

Study design

Cross-sectional assessment of patients who presented for a free head and neck cancer screening was performed.

2

Study design

Cross-sectional assessment of patients who presented for a free head and neck cancer screening was performed.

3

Materials and methods

Two free HNC screenings were held (one year apart in 2012 and 2013) across multiple sites at a large Midwestern hospital system with both urban and suburban clinics. Data was collected with full institutional review board (IRB) approval. Participants were eligible if they (a) presented for the one of the free HNC screenings, (b) were between 18 and 89 years of age, and (c) able to understand adequate English to read/sign an IRB approved consent form. Study-related involvement was considered separate from the screening; anyone who presented for the free screening was provided a free screening regardless of study related activity.

Following consent, participants were given a survey which assessed for demographics (age, gender, and race/ethnicity), location of screening, basic cancer history, current potential HNC symptoms, interest in volunteering to promote awareness of HNC, and whether the program increased their knowledge of HNC. They were also given a behavioral risk history assessment (alcohol, tobacco, and sexual), explained in detail below. At the second screening date (2013), two additional components were added: a brief assessment of knowledge regarding HPV in relation to HNC and a brief measure of adult medical literacy (again, explained in detail below).

3.1

Assessments

3.1.1

History of behavioral risk for HNC assessment

The history of behavioral risk for HNC survey was developed for use in patients in our clinic to screen for history of behaviors which have been shown to increase risk for developing HNC, specifically pertinent tobacco, alcohol, and sexual history . The behavioral risk assessment was developed using a theoretical and empirical approach, items were developed within each of the three categories based upon prior literature indicating a behavior’s association with the development of HNC. For tobacco products this included smoking status (never, past, or current), number of pack years, other tobacco exposure (e.g., growing up in a home where someone smoked), prior smoking history (including how long ago they quit), and other tobacco product use (e.g., cigars, chewing tobacco). For alcohol, data collected included age at first alcohol use, number of years they have consumed alcoholic products, and average daily use. For sexual behavior, data collected included age at first intercourse, lifetime number of vaginal sexual partners, lifetime number of oral sex partners, history of anal or casual sex, and whether they regularly use protection when engaging in sexual activity with a new partner.

3.1.2

HPV-related knowledge

The 15-item HPV-related knowledge measurement was created for the purpose of this study to measure the community’s basic understanding of HPV. It was composed of general statements regarding oral HPV with topics including; risk of transmission, presentation of HPV, and HPV’s relationship to cancer (see Table 3 ). Responses were either “True” or “False.” Wording of the questions and response options (true/false) were intentionally absolute to address public knowledge of potential or unclear risk. The number of correct responses was summed for a total score out of 15.

Table 1

Frequency of Particpant Characteristics.

Variable	n (%)
Age [mean, SD]	[58.5, 13.9]
Range	23–89
Gender
Female	119 (61.3%)
Male	75 (38.7%)
Race
Black	94 (48.5)
Caucasian	89 (45.9%)
Asian	5 (2.6)
American Indian/Alaskan Native	4 (2.1)
Unknown/preferred not to respond	2 (1)
Location
Urban	110 (56.7)
Suburban	84 (43.3)
Frequency of reported current symptoms (% of total sample reporting)
None	106 (54.6)
Change in voice	16 (8.2)
Sore throat	32 (16.5)
Sore in mouth	16 (8.2)
Lump in throat	10 (5.2)
Tooth/gum problem	21 (10.8)
Bleeding	2 (1.0)
Earache	21 (10.8)
Swallowing difficulty	18 (9.3)
Growth in neck	9 (4.6)
Swelling in head and neck	11 (5.7)
Denture problems	8 (4.1)
Aware that symptoms (list provided) were early signs of HNC	69 (35.6)
Been shown in the past how to perform an oral self-exam	8 (4.1)
Interested in volunteering to promote HNC awareness	71 (36.6)
Program increased your knowledge/awareness of HNC	111 (57.2)
Smoking history
Never smoked	83 (42.8)
A past smoker	68 (35.1)
A current smoker	40 (20.6)
Preferred not to respond	3 (1.5)
History of treatment for HNC	7 (3.6)
History of treatment for another cancer	30 (15.5)
First degree relative with a history of HNC	38 (19.6)
During childhood, lived with an adult who smoked	132 (68)
Lifetime # of vaginal sex partners
0	31 (16.0)
1 to 5	96 (49.5)
6 to 25	44 (22.7)
26 or more	16 (8.2)
Missing/preferred not to respond	7 (3.6)
Lifetime # of oral sex partners
0	58 (29.9)
1 to 5	95 (49.0)
6 to 25	19 (9.8)
26 or more	13 (6.7)
Missing/preferred not to respond	9 (4.6)
Regularly uses protection when having sex with a new partner:	84 (43.3)

Table 2

Means (SD) of Participant Characteristics.

	Mean (SD) [range]
Cigarettes (of those reporting a tobacco history)
Age when started smoking regularly	18.59 (5.18) [8–40]
Years smoked	10.12 (15.25) [0–60]
Average # cigarettes per day	11.98 (11.29) [0–40]
Average # cigarettes over past 30 days	6.56 (14.17) [0–100]
If quit, how many months since last smoked	131.06 (189.34) [4–720]
Alcohol
Age of first alcoholic drink	18.71 (5.22) [4–59]
Years drank alcohol	19.96 (18.20) [0–60]
Average alcoholic drinks per day	0.50 (1.08) [0–6]
REALM-R	7.30 (0.91)
Number of questions correct regarding HPV (out of 15)	10.08 (3.54)
Median	11
Range	0 to 15

Table 3

HPV-related knowledge.

We are also interested in learning what people know about the transmission of the human papillomavirus (HPV). Please place a check whether these statements are true or false:
(1) HPV can cause genital warts……………………………………………………………………..	□True	□False
(2) HPV can cause cervical cancer…………………………………………………………………..	□True	□False
(3) HPV can cause penile cancer…………………………………………………………………….	□True	□False
(4) HPV is associated with oral cancer………………………………………………………………	□True	□False
(5) With more sexual partners, I have increased risk of infection with HPV……………………..	□True	□False
(6) HPV is transmitted through sexual intercourse………………………………………………….	□True	□False
(7) Performing oral sex puts me at risk for HPV infection………………………………………….	□True	□False
(8) If I perform oral sex with multiple partners, I am at increased risk for HPV infection………	□True	□False
(9) HPV can be transmitted through kissing…………………………………………………………	□True	□False
(10) HPV is transmitted through sneezing/coughing…………………………………………………	□True	□False
(11) Sharing food and utensils puts me at risk for HPV infection…………………………………..	□True	□False
(12) Using condoms prevents HPV infection…………………………………………………………	□True	□False
(13) I can only be infected with HPV if my partner has genital warts………………………………	□True	□False
(14) HPV can be asymptomatic………………………………………………………………………..	□True	□False
(15) If I have been vaccinated for HPV, I cannot be infected with HPV……………………………	□True	□False

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