Discussion

As patients increasingly reference the internet in pursuit of medical knowledge and advice, healthcare providers should be aware of the content accessed to ensure that educational resources meet patient informational needs. Understanding online search patterns enables high-quality, evidenced-based educational resources to be tailored to patient interest. Because internet searches may originate directly from patients, this investigation is not constrained by selection and small sample size biases that limit traditional clinical research. To our knowledge, this is the first study to characterise online search patterns among patients with HPV-related malignancies. This endeavour represents an important addition to the existing literature on the informational needs of this patient population, as data generated herein may inform development of educational materials, aid in shared decision-making and support patient preparedness for treatment. ^{Reference Windon, Le, D'Souza, Bigelow, Pitman and Boss9–Reference Fang and Heckman12}

In the USA, 39.5 per cent of HPV-attributable cancer cases are located in the oropharynx, and 30.4 per cent are located in the cervix.^{Reference Saraiya, Unger, Thompson, Lynch, Hernandez and Lyu5} Despite having a similar incidence, we found 3.5-fold more interest in HPV-related head and neck cancer among top online searches. Heightened interest in the oropharynx may be related to perceived severity of the diagnosis. This is suggested by the fact that the majority of survivability-related searches referenced the head and neck region (95.0 per cent), with only 2.3 per cent referencing cervical cancer. A recent report of HPV-associated cancers found that the 5-year age-standardised relative survival rate was 64.2 per cent for cervical carcinomas (n = 79 425) and 51.2 per cent for oropharyngeal squamous cell carcinomas (n = 80 151).^{Reference Razzaghi, Saraiya, Thompson, Henley, Viens and Wilson19} Other recent reports describe 5-year overall survival estimates of 77–89 per cent for HPV-associated head and neck cancer.^{Reference Lin, Wang, D'Souza, Zhang, Fakhry and Joseph20–Reference Clark, Holmes, O'Connell, Harris, Seikaly and Biron22} Despite having a similar, if not more favourable, overall survival rate, patients search patterns suggest increased concern about the prognosis of HPV-related oropharyngeal cancer. This is consistent with prior reports of fear and anxiety that patients experience as a result of the diagnosis.^{Reference Baxi, Shuman, Corner, Shuk, Sherman and Elkin10,Reference Dodd, Forster, Marlow and Waller13,Reference Mesters, van den Borne, De Boer and Pruyn23} It is therefore important for surgeons to communicate the favourable prognosis of HPV-related oropharyngeal cancer in comparison to HPV-negative oropharyngeal cancer. Educational materials should reference the most recent data on 5- and 10-year survival rates following treatment of HPV-related oropharyngeal cancer to meet patient demand for this information.

Patients display a disproportionate interest in the visual appearance of HPV-associated cancerous lesions of the head and neck region (96.8 per cent of appearance-related searches), with a miniscule number of searches for images of cancers in anogenital regions. In particular, patients were most interested in the appearance of tonsil cancer. Such searches may be driven by a desire to perform self-examinations if symptomatic or after diagnosis. In order to satisfy this high level of patient interest, educational materials should include representative images of labelled HPV-lesions in the oropharynx. This information may improve independent surveillance efforts undertaken on behalf of the patient, which hold the potential to improve recognition of recurrence and new primary tumours.

Despite being a colloquial and non-specific term, ‘HPV throat cancer’ was the overall most popular search query (7200 searches per month). Additionally, the analysis of search trends over time showed that ‘HPV throat cancer’ searches have increased in popularity in recent years (r (77) = 0.71; p < 0.001). We report a greater than 90-fold increased interest in ‘HPV throat cancer survival rate’ (900 searches per month) compared with ‘HPV tongue cancer survival rate’ (less than 10 searches per month). This disproportional interest in ‘HPV throat cancer’ rather than specific HPV cancer subsites within the oropharynx is concerning and likely multifactorial. Such search behaviours suggest an incomplete understanding that the ‘throat’ is described by anatomical subsites. It may also indicate that current consultation efforts do not effectively communicate the precise anatomical localisation of cancers. Although it is possible that physicians use the term ‘throat’ in situations of low health literacy, this general term should not be used in all consultations. Providing anatomically accurate cancer descriptions is necessary for patient counselling efforts as it serves to support informed consent. The importance of this topic is further highlighted by celebrity announcements of cancer diagnoses and recent controversies surrounding terms used in the media.

Importantly, HPV-associated oropharyngeal cancer localises to: the base of tongue; pharyngeal tonsils, anterior and posterior tonsillar pillars and glossotonsillar sulci; anterior surface of soft palate and uvula; and lateral and posterior pharyngeal walls.^{Reference Pai and Westra24,Reference Viens, Henley, Watson, Markowitz, Thomas and Thompson25} Understanding the specific cancer location within the ‘throat’ can have important implications on surgical morbidity and recovery. Taken together, our findings suggest that physicians should prioritise discussions of where oropharynx cancers are located, which represents an important area for physician-guided patient education. We recommend that patient educational materials include a labelled diagram of the oropharynx to highlight relevant anatomy.

Our analysis showed very low interest in vaccination searches (15.3 per cent) pertaining to HPV-associated cancer of the head and neck region. This low number of vaccination-related searches suggests that few patients are aware of the link between vaccination and cancers of the oropharynx, as suggested by prior related reports.^{Reference Verhees, Demers, Schouten, Lechner, Speel and Kremer26–Reference Luryi, Yarbrough, Niccolai, Roser, Reed and Nathan28} The finding that more Americans are incorrectly searching for an unsubstantiated relationship between HPV vaccination and ovarian cancer (26.9 per cent) than those who are searching for vaccination as protective against head and neck cancers (15.3 per cent) further emphasises an important knowledge gap. Similar to recent reports of HPV vaccine hesitancy,^{Reference Sonawane, Lin, Damgacioglu, Zhu, Fernandez and Montealegre29,Reference Margolis, Brewer, Shah, Calo and Gilkey30} we report a disconcerting proportion of vaccination searches referencing HPV vaccination as being a cause of cancer rather than preventing cancer (33.3 per cent, 590 searches per month). Although no Google-populated websites contained false information to support this assertion, it is imperative that patient educational materials clarify that vaccination effectively prevents HPV-related oropharyngeal cancer and does not cause cancer.

Upon anatomical subsite analysis, it was found that 35.0 per cent of the top 20 searches on ‘HPV tongue cancer’ concerned cancer appearance, and more specifically the finding of ‘bumps’ on the tongue. For this reason, we recommend that patient educational materials clarify the difference between the base of tongue and anterior tongue, as well as fungiform papillae, HPV-related papilloma, and cancer. Moreover, the clinical significance of cancer staging appears to be topic of interest, with more than 1250 searches per month on HPV-related tonsil cancer stages. Given the high volume of questions on tumour staging, educational materials that provide staging definitions and their prognostic significance may be helpful to many patients. Furthermore, there were 44 distinct queries pertaining to how HPV is contracted prior to causing oropharyngeal cancer. Collectively, these accounted for approximately 440 searches per month, indicating a significant interest in practices that might transmit high-risk HPV. For this reason, the authors recommend that educational materials should discuss these mechanisms of transmission and communicability.

This study has several limitations. Firstly, it is not possible to know whether the captured searches originated from patients, family members, health professionals, medical students or researchers. It is therefore an assumption that our analysis captures patient interest. Demographic information of internet users performing such searches is also not available. This study may not fully capture the true patient population, especially those in more rural areas, the impoverished, or non-English speaking persons residing in the USA. Moreover, some users searched for HPV-associated cancers involving the oral cavity. These may represent anatomically imprecise enquiries into cancers that are located in the oropharyngeal region. As such, these search queries were grouped into a broader head and neck region category rather than the oropharyngeal region category, given that there is an ongoing debate as to whether HPV plays a role in the development of carcinoma of the oral cavity.

Another limitation of this work is that the majority of cervical cancer is caused by HPV, with HPV-independent cervical cancers representing around 6 per cent.^{Reference Rodríguez-Carunchio, Soveral, Steenbergen, Torné, Martinez and Fusté31,32} Patients searching for content on visualisation, symptomatology, survivability and prognosis, vaccination, and general and other information on cervical cancer may not include the acronym ‘HPV’ in their search query. Therefore, these searches would not be captured using the methods employed by the current study. However, because women aged 21 to 65 undergo routine pap smear screening, the connection to HPV is better understood, which could result in patients being more likely to include the acronym ‘HPV’ in their searches. Additionally, HPV-associated cancers present on the vagina, vulva, penis and anus, which collectively account for an incidence near 14 000 per year in the USA.^{Reference Saraiya, Unger, Thompson, Lynch, Hernandez and Lyu5} The fact that relatively few search queries pertained to these anatomical sites suggests that capture limitations because of omission of ‘HPV’ from cervical cancer searches may be minimal. Regardless of the search volume comparisons among various HPV-associated cancers, this report accurately quantifies patient interest by thematic categories. Nevertheless, future studies into each anatomical cancer site may be warranted.