Abstract
Objective
To evaluate head and neck cancer (HNC) risk factors and symptoms (RFS) awareness, human papillomavirus (HPV) vaccination rates, and socioeconomic factors among an underserved population at a community free clinic, and to implement an adaptable educational intervention to address low awareness of HNC RFS.
Study Design
Cross‐sectional survey.
Setting
Community Free Clinic.
Methods
We surveyed patients participating in HNC screenings including their knowledge of HNC RFS, HPV vaccination status, patient demographics, and other pertinent questions. After the initial survey, volunteers used public available infographics by the Head and Neck Cancer Alliance to educate participants about HNC. A post‐screening survey assessed short‐term retention and understanding.
Results
Fifty‐nine participants were included. Most had limited knowledge of HNC risk factors and symptoms, except for tobacco use. Only 11.9% were HPV‐vaccinated, including 6.25% of 27–45‐year‐olds; 30% of participants had not heard about HPV and an additional 23.3% did not know a vaccine existed. Most participants were low‐income, with 86.2% making under $50,000 a year (58.6% making under $25,000). Participants reported insurance status (42.3%) and other costs (25.8%) as barriers to seeking HNC screening. The education intervention significantly improved participants’ ability to identify symptoms and risk factors (P < .0001 for all surveyed items), including HPV as a risk factor (P < .0001).
Conclusion
Our intervention successfully improved short‐term knowledge of HNC RFS. The study revealed low HNC awareness, HPV awareness, and HPV vaccination rates among eligible, at‐risk patients. This study outlines an implementable intervention to address low HNC awareness in underserved populations.
Keywords: head and neck cancer risk factors, head and neck cancer screening, head and neck cancer symptoms, patient education, underserved populations
Head and neck cancer (HNC) constitutes approximately 3% of all annually diagnosed malignancies across the United States, with an estimated total of 65,000 yearly diagnoses within the United States and 550,000 cases globally. 1 There has been a significant rise of Human papillomavirus (HPV) positive HNC in the United States. Focused analysis of national HNC characteristics has shown opposing trends over the last two decades, in which non‐HPV‐associated oral cancer has maintained a declining incidence trajectory, paralleling that of the general HNC slope, while the diagnostic frequency of HPV‐associated oral cancer and late‐stage HNC has continued to increase. 2 , 3
It is well established that cancer staging is highly correlative with the prognostic outcome of the disease, illustrating the importance of ensuring maximum efficiency in early disease detection as well as subsequent therapy initiation. Lack of screening and patient education have proven to be overarching obstacles in effectively identifying HNC. 3 Less than 30% of oral cancers are diagnosed early in disease progression and result in delays in treatment; late diagnosis and treatment delay can be attributed, in part, to socioeconomic status (SES) and demographic elements. 4 Poor HNC outcomes have been demonstrated in urban populations, primarily constituted by people of color and underserved low‐income communities. 4 Access to care and screening is imperative to early diagnosis. Patients 65 or older with Medicare have improved outcomes compared to uninsured and Medicaid‐insured individuals who are younger than the Medicare population, and this can be attributed to the increased access to care among those enrolled in Medicare. 5
Lack of medical education on HNC has been shown to be a critical contributor in patients foregoing medical evaluation. A 2010 study on 352 people experiencing homelessness (PEH) in Atlanta, Georgia found that approximately half of their study population had complaints of one to two otolaryngologic issues, but the majority (72.3%) of them did not seek or receive medical care. 6 Additionally, education deficit has also been shown to be implicated in loss to follow‐up in lower socioeconomic populations, wherein studies have shown marked improvement in medical compliance following adequate education on disease and proper direction in next‐step management. 6 , 7
There have been studies in the literature that have aimed to address this educational deficit of HNC risk factors and symptoms in PEH. A 2020 scoping review of Community‐based oral health interventions for PEH identified two education related interventions on oral cancer. 8 One United Kingdom‐based 2014 study provided visual infographics on oral cancer risk factors (smoking and alcohol use). 9 This study did not evaluate for changes in awareness via a pre‐intervention and postintervention questionnaire; it instead asked participants for free response comments about the intervention. 9 The review also identified a 2008 US intervention where student nurses implemented an education program on oral health for PEH, which included oral cancer risk factors and symptoms. 10 This article stated that the 279 participants in the program “demonstrated a two to four‐letter grade improvement in oral health knowledge.” 10 However, the study did not provide any statistical analysis or their pre‐ and posttest assessments they used to evaluate oral health knowledge. 10
Underserved and low‐income communities may also struggle with HPV awareness and HPV vaccine uptake. A 2022 study demonstrated low awareness of HPV and HPV vaccine uptake in a low‐income, primarily underserved minority community. 11 Additionally, the study demonstrated higher HPV awareness and vaccine uptake among females compared to males. 11 Youth experiencing homelessness face similar struggles in HPV vaccine initiation and completion. 12
The HPV vaccine has been recommended by the US Advisory Committee on Immunization Practices (ACIP) for those aged 9‐26 since 2006 for females and since 2011 for males. 13 The ACIP expanded its recommendation in adults aged 27‐45 in 2018. 13 Health literacy has critical implications in the utilization of cancer prevention measures. Although there is notable established evidence supporting HPV vaccine efficacy, rates of vaccination continue to remain low in certain high‐risk populations. Southern US states, such as Texas, have been found to have low HPV vaccination rates. 14 Texas has low HPV immunization series initiation and completion rankings of 44th and 48th, respectively. 14 Health literacy, particularly ability to understand information on HPV and the risk of HPV‐associated cancers, has been shown to increase HPV vaccination among adults aged 27‐45. 15
It is clear that underserved, uninsured, and/or PEH struggle with access to care, including HNC screening. It is also clear that a disparity in HPV awareness and vaccination exists among these individuals. Our otolaryngology department, like many across the country, organizes HNC screening events for underserved and unhoused populations. We set out to implement an intervention to assess and address this disparity in HNC understanding in this high‐risk population. While our intervention was a part of a community screening event, the focus of this study was on awareness and education of HNC among our participants rather than the screening itself. We particularly focused on HNC symptoms and risk factors. We also aimed to qualitatively evaluate patient confidence in their understanding of HNC symptoms and risk factors. Most importantly, we wanted our educational intervention to be widely accessible, so we utilized publicly available infographics on HNC risk factors and symptoms provided by the Head and Neck Cancer Alliance. 16 , 17 This study set out to assess the effectiveness of an educational intervention utilizing publicly accessible infographics on patients’ understanding of HNC risk factors and symptoms.
Methods
Study Design
The Texas Tech University Health Sciences Center Internal Review Board approved this study (IRB L22‐271). Patient consent was obtained before they participated in the study. To evaluate the effect of the educational session on patients’ understanding of HNC, the survey was conducted at a free clinic that serves uninsured and unhoused patients who visited the clinic from 4/18/2023 to 10/18/2023. The demographic information, such as gender, age, SES, and race, of the patient cohort was gathered (Supplemental Table 1, available online). The study collected basic medical and social history such as tobacco use, alcohol consumption, and HPV vaccination status (Supplemental Table 1, available online). Patients who were not vaccinated for HPV were asked why they were not vaccinated. The patients then completed a questionnaire before and after the educational session about HNC risk factors, symptoms, and their confidence in knowing these symptoms and risk factors (Supplemental Table 2, available online). After the presurvey, patients were shown the infographics provided by the Head and Neck Cancer Alliance on HNC risk factors and symptoms (Supplemental Figures 1 and 2, available online). A student volunteer discussed each infographic and its topics and was available to answer any lingering questions. Patients were also verbally educated on assistance and support programs for HNC patients. Patients were then screened for HNC by an otolaryngologist. After their screening, patients were then administered a post‐survey that mirrored pertinent questions in the pre‐survey (Supplemental Table 2, available online). To avoid potential bias, patients were provided with the questionnaire by different survey conductors.
Statistical analysis
Statistical analyses were performed using GraphPad Prism 9.5.1. χ 2 tests were performed for categorical variables, including demographic variables, and McNemar tests were used to compare categorical variables in pre‐ and post‐education sessions. Statistical significance was determined as P < .05.
Results
A total of 59 patients participated in our HNC screening program and the education session, and all of our results are outlined in Supplemental Table 1, available online. Out of our 59 participants that were screened, 1 patient had high‐risk features that warranted further examination; however, the patient was unable to be reached to schedule a follow‐up appointment. A small portion of patients elected not to answer certain questions in the presurvey.
Demographic data is outlined in Supplemental Table 1, available online; 63.8% (n = 37) of our study participants were female. The average age was 48.0 (SD = 11.8) years old, with the age group 50‐60 being the largest cohort. About a third of our study population were patients 45 years old or younger (36.2%, n = 21). Approximately 70 percent (n = 41, 70.7%) of the patients were employed. Most patients (84.3%, n = 43) identified as White/Caucasian, and 57.1% of patients (n = 32) were of Spanish, Hispanic, or Latino origin. 31% of patients (n = 18) replied that high school is their highest level of education, and another 31% replied college level without a degree as their highest. 58.6% of patients (n = 34) came from an annual household income of less than or equal to $25,000. About half of the patients (50.9%, n = 29) were single, while 28.1% (n = 16) were married. Besides demographic information, patients reported HPV vaccination status (11.9%, n = 7), smoking history (42.4%, n = 25), alcohol use (30.5%, n = 18), paan, supari, betel nut, gutkha, or chewing tobacco use (6.8% n = 4), recreational drugs use (15.2%, n = 9), prior HNC diagnosis (8.5%, n = 5), a prior history of other forms of cancer or familial history of cancer (67.8%, n = 40).
Following the pre‐education survey, patients were provided with education sessions on HNC risk factors and symptoms (Supplemental Figures 1 and 2, available online). Further information is available at www.headandneck.org. Figure 1 further delineated HPV vaccination status among all participants and those between the ages of 27‐45. We found that the proportion of patients’ vaccination status in both groups did not show a statistically significant difference (P = .81). Lastly, when patients were asked if they had recently experienced any of the symptoms without patients being informed that they were related to HNC, persistent pain around the neck, ear, or mouth was the most common symptom (35.9%, n = 28). Regarding the barriers to screening and treatment for HNC, insurance status (42.3% and 44.1%, respectively) and fear of other costs (25.8% and 23.7%, respectively) were the overwhelming choices (Figure 2A,B). Also, the chi‐square revealed no significant difference between reasons for avoiding screening versus treatment (Figure 2C). The P value for comparisons between each variable for screening versus treatment is outlined in Figure 2C.
Figure 1.
HPV vaccination status. (A) Shows HPV vaccination status of the entire study population, (B) shows HPV vaccination status of participants aged 27‐45, and (C) shows the difference in vaccination status between those ages 27‐45 in the study and the rest of the study population.
Figure 2.
Patient barriers to seeking HNC screening and treatment. This figure outlines what barriers patients have to seeking out HNC screening and what would prevent them from seeking out treatment.
Given that only approximately 10% of patients were vaccinated for HPV, we examined the reasons behind the patients’ decisions. Thirty percent of patients answered that they did not know the existence of the virus, and 23.3% expressed unfamiliarity with the existence of the vaccine (Figure 3A). Figure 3B was the result of the same questionnaire only for patients between 27 and 45 years old or younger, a key demographic due to their recent eligibility for the HPV vaccine, demonstrating the similar proportions in the reasons in comparison to that from all patients. Among this population, 13.6% of patients answered they did not know the existence of the virus, and 22.7% expressed unfamiliarity with the existence of the vaccine, and 13.6% did not know they were eligible for the vaccine. This population exhibited low vaccination rates, with 75% of participants unvaccinated and 18.8% unsure of their vaccination status (Figure 1). The P values for each variable comparison between age groups are denoted in Figure 3B.
Figure 3.
Reasons for being unvaccinated. This figure outlines the percent breakdown of reasons of all patients in our study cohort (A) and patients between 27 and 45 years of age (B) for not being vaccinated for HPV if they had not previously received the vaccine.
Next, the answers from the questionnaire were analyzed to evaluate the effectiveness of the education session. McNemar's test demonstrated that after the education session, more patients were able to recognize HPV as a risk factor, were more confident in noticing warning signs and other risk factors, and were aware of assistance programs for HNC treatment (P < .0001 for all categories) (Figure 4A,B,D,E,F). Also, while there was no significant change before and after the education in this category, most (~85%) patients stated that they were likely to go to the doctor for potential HNC symptoms (Figure 4C). This contrasted with patients with low HPV vaccination status (roughly 10%), suggesting limited patient recognition of the HPV vaccine as a preventative measure of HNC.
Figure 4.
Questions asked to evaluate patients’ understanding of head and neck cancer. On a scale of 1 to 5. 1,2, and 3 were defined as low confidence with 4 and 5 being high confidence. (A‐F) Shows different questions that patients asked prior to and following the educational intervention.
In addition to the evaluation of patients’ confidence, the post‐education survey included questions to assess patients’ knowledge after the educational session. Overall, there was a significant improvement in patients’ ability to identify symptoms and risk factors (P < .0001 for all categories) (Figure 5A,B). While “Lumps or non‐healing sores in the mouth, throat, or neck” was the most recognized symptom before the education session, nearly 100% of patients successfully identified all symptoms for HNC after the session. Similarly, more than half of participants initially understood that alcohol and tobacco use increase the risk of developing HNC. Then, almost all patients were able to identify other risk factors after the session.
Figure 5.
Objective assessment of patients’ understanding of head and neck cancer. Patients were asked to identify the symptoms (A) and risk factors (B) of head and neck cancer. Statistical significance is noted as ****P < .0001.
Discussion
This study set out to implement and evaluate an educational intervention on HNC risk factors and symptoms for an uninsured and/or unhoused population. Additionally, the intervention revolved around publicly accessible infographics to make implementation in other environments and screening events seamless. To our knowledge, this is among the first studies in the literature to both implement an educational intervention on head and neck cancer for PEH and quantitatively assess its effectiveness. Although the two prior interventions described in the introduction provided oral cancer education for PEH, neither published quantitative findings to evaluate the success of their programs. 9 , 10 A 2023 systematic review of otolaryngology health needs and community‐based interventions identified one study that mentioned an educational intervention; however, no specific details regarding the intervention or its success were described. 18 Instead, this study focused on inner‐city screening events identifying individuals at risk for HNC. 19
Other studies, however, have implemented similar educational interventions with other populations. For example, a study used an educational pamphlet to increase awareness in HNC patients of alcohol and tobacco as risk factors for HNC. 20 This study found statistical significance in immediate recall success in identifying these risk factors. 20 Another study implemented an educational intervention in a majority Asian refugee population to raise awareness of betel nut as a risk factor for oral cancer. 21 This study demonstrated significance in awareness of betel nut as a risk factor as a cause for oral cancer following the educational intervention. 21
We demonstrated strong significance in short‐term retention of HNC risk factors and symptoms among our patient population following the educational intervention. Patients felt comfortable in identifying warning signs and risk factors for HNC. Patients also gained awareness of local assistance programs for patients with HNC. This study also evaluated the awareness of HNC risk factors and symptoms among an uninsured and/or unhoused population along with HPV vaccination rates and awareness. The vast majority of our patient population were not vaccinated for HPV and were unaware of HPV itself. This can partly be attributed to some of our patients being over 45 years old; however, we still had a sizeable patient population that was 45 years old or younger. Additionally, a large portion of our patients were unaware of many of the risk factors and symptoms of HNC. More than half, and in many cases more than 80 percent, of patients were unaware of the varying risk factors and symptoms of HNC. The only exceptions were alcohol use and tobacco use, which over half of patients were able to identify as risk factors for HNC in the presurvey.
This study builds on several interrelated areas in HNC awareness, HNC screening, HPV awareness, and HPV vaccination. A recently published expansive review on cancer screening for PEH highlighted the need for cancer screening and prevention services for this population, and identified two studies showing high tobacco and alcohol use coupled with low awareness of their adverse effects were risk factors for HNC in PEH. 22 The increased risk of HNC among PEH in the US should not be understated, as an expansive study found men experiencing homelessness face greater risk of developing and dying from oropharyngeal cancer, and PEH in generally were more likely to be diagnosed with advanced stage HNC. 23 These factors not only show the need for HNC screenings for this at‐risk population, but also suggest the value of an educational intervention that aims to decrease the knowledge gap in HNC symptoms and risk factors.
HPV education and vaccination has been an area of interest for HNC prevention in the US, particularly given the rise of HPV positive HNC. 2 , 3 As previously mentioned, awareness and uptake of the HPV vaccine is low in youth experiencing homelessness and in low‐income, underserved minority communities. 11 , 12 The low awareness of HPV among PEH extends beyond HNC. A study evaluating women experiencing homelessness found that over 40 percent of participants had not heard of HPV or knew HPV causes cervical cancer. 24 Additionally, over half of participants had not heard of the HPV vaccine and only a quarter of participants had heard about HPV from their provider. 24 The expansion of the HPV vaccine has been an important development in HNC prevention, and this benefit extends to PEH 45 years of age or less. A study published in 2020 found that 27 to 45 year old individuals in the US had a high awareness of HPV (72.9%) and the HPV vaccine (67.1%), and it found that participants were more likely to be aware of these factors if they had a higher level of education, had a health care provider that they regularly see, or were female. 25 Importantly, the study identified a low awareness (36.1%) of HPV as a risk factor for non‐cervical cancers. 25 There is considerable work to be done to address HPV related disparities in PEH and low income communities, and among 27‐45 years old adults.
A 2020 study that evaluated public awareness of HNC symptoms and risk factors found that public awareness continued to be “suboptimal.” 26 The study also found low overall awareness of HPV as a risk factor for HNC and found that lower income and less educated participants were less likely to know the relation of HPV to oropharyngeal cancer. 26 Our study builds on this study by both addressing the problem they identified—low awareness of HNC risk factors and symptoms—through an educational intervention and focusing on HNC awareness among a particularly underserved population that tends to be low income and have less education. The most closely related study in the literature to our study was conducted from 2005 to 2008 and screened over 300 PEH in an urban center in the southern US for HNC. 6 The study focused on HNC screening itself, its outcomes, and whether patients sought out care if they had HNC related symptoms; additionally, the study evaluated patient awareness of one key risk factors: tobacco use. 6 Importantly, nearly three‐quarters of patients did not identify tobacco use as a risk factor for HNC. 6 Our study demonstrated that a majority of patients identified tobacco use as a risk factor for HNC. This suggests that the progress on tobacco use education and mitigation efforts in the US has had an impact on our study population of PEH in west Texas, one that is difficult to reach. There are several notable differences in our study. Patients were not screened on their awareness of any other HNC risk factors or symptoms, and there was no educational intervention in this study. Finally, this study did not discuss HPV—the HPV vaccine was not yet approved for men or for adults between 27 and 45 years old—while our study assessed both vaccination rates and awareness of HPV.
This study demonstrates the efficacy and feasibility of an educational intervention for HNC risk factors and symptoms in an underserved, high risk population. This intervention successfully demonstrates strong short‐term retention of these risk factors and symptoms. It is an important addition to the literature because it gives a blueprint on implementing an educational intervention in any HNC screening event, regardless of location or patient population. While a student volunteer administered our educational intervention, this infographic‐based intervention can be implemented by a member of a clinical team, such as a medical assistant. While there are multiple studies in the literature shedding light on the lack of awareness of HNC in underserved populations, this is one of the first studies, to our knowledge, that implements an educational intervention to address this lack of awareness among PEH and quantitatively evaluate its success.
Our study also sheds light on the lack of awareness of critical risk factors and symptoms among uninsured, low‐income, and/or unhoused individuals. Finally, this study builds on existing literature on HPV awareness and focuses on HPV knowledge in the context of HNC. It identifies areas for future improvement in the 27 to 45 years population by highlighting the low vaccination rate and awareness of HPV.
There are two main limitations to this study. The first is that our sample size was small, and this intervention should be further studied in a larger population. The second limitation is the lack of long term follow‐up to evaluate long‐term retention of the educational intervention. Our study population, however, is one that is historically difficult for long‐term follow‐up.
Conclusions
In this study, we set out to implement and evaluate an educational intervention utilizing publicly available infographics on HNC risk factors and symptoms in a free clinic setting serving a primarily uninsured and/or an unhoused population. It aimed to evaluate patient knowledge of HNC risk factors and symptoms, the HPV vaccination rate of the population, and awareness of assistance programs for HNC patients. Our intervention successfully improved short‐term knowledge of HNC risk factors and symptoms, and it increased patient confidence in identifying HNC warning signs and risk factors. This study also identified disparities in HPV vaccination among vaccine‐eligible patients and highlighted areas for future interventions. This study outlines an easily implementable intervention to address educational disparities. It also paves the way for future studies to address HNC educational disparities and HPV awareness and vaccination among at‐risk populations.
Author Contributions
Jad F. Zeitouni, designed, drafted, and edited this study and its manuscript along with assisting with data acquisition. Jyntre Millsap, contributed with data collection, manuscript drafting, and the study design. Harry May, contributed to data analysis and project design. Wooyoung Jang, contributed with data collection and the study design. Yusuf Dundar, contributed to study design and revision of the manuscript. Additionally, he provided approval for the publication of the content and agreed to be accountable for the work.
Disclosures
Competing interests
None.
Funding source
None.
Supporting information
Supporting information.
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These authors contributed equally to this article.
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Associated Data
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Supplementary Materials
Supporting information.
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