Ten-year (2009–2019) epidemiological study of head and neck, salivary glands and upper aerodigestive tract cancers, and overall survival outcomes in the Northern Territory of Australia

Introduction

Head and neck, salivary glands and aerodigestive tract cancers (HNACs) are recognised as the sixth most prevalent cancers globally, with an upward trend in incidence rates.1 These cancers include malignancies in the oral cavity, nasopharynx, salivary glands, hypopharynx and larynx, but exclude thyroid cancers.2 Key risk factors encompass lifestyle habits such as tobacco smoking, betel nut chewing, alcohol consumption, and poor nutrition and dentition, predominantly impacting individuals between 50 and 70 years.3 4

Recent years have seen a growing link between human papillomavirus (HPV) and head and neck squamous cell carcinoma (HNSCC).5 P16, a surrogate marker for HPV, is often used in tumour analysis due to constraints related to cost and time.6 It is noted that in the USA, up to 70% of oropharyngeal SCC cases are P16-positive, indicating a more favourable prognosis.7 8 This prevalence of P16-positive SCC, however, varies regionally.9 10

HNACs are staged using the TNM system as defined by both the Union for International Cancer Control and the American Joint Committee on Cancer (AJCC).11

In Australia’s Northern Territory (NT), spanning 1 349 129 km², the incidence of HNACs is significantly higher compared with the rest of the country. This increase is particularly evident in males (52% higher) and to a lesser degree in females (10.2% higher), as categorised under the Australian Statistical Geography Standard (ASGS).12–14

Government statistics from 2013 to 2017 reflect a 72% 5-year survival rate for individuals diagnosed with HNACs, including lip cancer, with women experiencing slightly higher rates than men.15 However, disparities in outcomes are evident, particularly among Indigenous Australians. A study by Moore et al identified socioeconomic status, comorbidities and delayed treatment as key factors influencing survival in HNACs, noting a higher likelihood of death from non-cancer causes among Indigenous patients.16 Furthermore, a Queensland study (1998–2004) highlighted no significant differences in HNACs incidence between Indigenous and non-Indigenous Australians yet found a markedly higher mortality rate among Indigenous patients.16

This study aims to conduct a comprehensive and methodically examination of head and neck cancers in the NT over a 10-year period. We intend to gather detailed epidemiological data focusing on factors such as stage, gender, ethnicity, risk factors and comorbidities at diagnosis. Additionally, the study will analyse overall and disease-specific survival rates, with a focus on identifying modifiable factors that could significantly improve patient outcomes, especially within the Indigenous population.

Methods

Results

Overall clinical and demographic data

The research encompassed 524 patients with HNACs, of whom 430 were male (accounting for 82% of the study group) and 94 were female (making up the remaining 18%). Within this cohort, 186 individuals (35.5%) were identified as Indigenous Australians, while the remaining 338 participants (64.5%) were non-Indigenous.

In this cohort, males comprised the majority (82%), and most participants were non-Indigenous Australians (65%). A substantial proportion, over half (55%), were from regional areas as per the ASGS level 3 classification. The median age at diagnosis across the study was 62 years, which remained consistent when comparing Indigenous and non-Indigenous patients. Multivariate analysis revealed a significant difference in the incidence of head and neck aerodigestive tract cancers (HNAC) between the NT and the rest of Australia. Specifically, the OR was 11.23 with a 95% CI of 10.26 to 12.28 (p<0.0001) (as shown in figure 1A).

Request permission

Figure 1

(A) Clinical and demographic profile of patients with Head and neck, salivary glands and aerodigestive tract cancers (HNACs) patients by Indigenous status (B) Age-standardised incidence. Overall incidence, incidence by gender and by ethnicity are represent. P value derived from two-tailed proportions z-test for categorical parameters and Kruskal-Wallis rank test for continuous parameters. *Significance at p<0.05. ASGS, Australian Statistical Geography Standard; PYH, pack-year history.

In the study of HNACs in the NT, the analysis included a breakdown by cancer type and primary subsite. The study examined various primary subsites of HNAC, identified by the TNM, ICD-10-CM Diagnosis Code. These included nasopharynx, sinonasal, oral cavity, oropharynx, major and minor salivary glands, hypopharynx, larynx and unknown primary.

The most common subsite was the oropharynx, which accounted for 205 cases (30%) of the total, comprising 130 non-Indigenous and 75 Indigenous patients. The study also reported survival rates by subsite, revealing significant differences in outcomes depending on the subsite affected. For example, salivary glands showed the highest probability of survival at 61.8%±1.22%, while the nasopharyngeal subsite had the lowest survival rate at 21.4%±0.7%. The oropharyngeal subsite had a probability of survival of 36.3%±2.1%.

These details are crucial as they provide insights into the behaviour and treatment of different types of head and neck cancers, which are essential for planning targeted interventions and improving patient outcomes.

Overall survival

Figure 2 presents the 5-year survival rates for head and neck cancer patients in the NT, as determined by Kaplan-Meier analysis. The OS rate for these patients was 39.6% (with a margin of error of ±2.9). A breakdown by gender revealed that males had a lower survival rate of 36.3% (±4), while females had a notably higher rate of 48.3% (±4). When considering ethnicity, the survival rate for Indigenous patients was 25.6% (±1.8), significantly lower than the 46.0% (±2) survival rate observed in non-Indigenous patients.

Request permission

Figure 2

Five-year relative mean survival. (A) Overall survival for Head and neck, salivary glands and aerodigestive tract cancers (HNACs), male, female and combined. (B) Five-year survival analysis comparing Indigenous, non-Indigenous population and combined. (C) Table showing clinical variables and Kaplan-Meier’s 5-year survival. P value derived from two-tailed proportions z-test for categorical parameters and Kruskal-Wallis rank test for continuous parameters against the Australian mean 5-year survival. *Significance at p<0.05. P16: Cyclin-dependent kinase inhibitor 2A highly correlated with human papillomavirus infection in head and neck squamous cell carcinoma.4732 RA, remoteness area.

Survival by stage at presentation

Our analysis revealed that a minority of the study participants, specifically 27.67%, were diagnosed at the early stages (I and II). In contrast, a significant majority, 72.33%, presented with cancer at the advanced stages (III and IV), as illustrated in figure 3A. Notably, within the Indigenous subgroup, which constitutes 32.33% of the study population, there was a pronounced tendency for advanced-stage diagnosis; 86% of these patients were found to be in the advanced stages, with stage IVa being the most frequently observed stage at the time of diagnosis. This was in comparison to the non-Indigenous population, where 66.4% were diagnosed at advanced stages.

Request permission

Figure 3

This figure presents an analysis of the stage of cancer presentation broken down by ethnicity. (A) Colour table with details of the staging by grades and ethnicity. (B) Five-year mean survival by stage of disease. In regard of the analysis of treatment modalities by ethnicity and corresponding 5-year survival rates. (C) Staging by curative intent and ethnicity. (D) Kaplan-Meier 5-year mean survival rates by treatment intent. (E) Effect of excluding palliative intent patients on 5-year survival rates in head and neck aerodigestive tract cancer study. (F) The treatment modalities for patients with curative intent.

Further, figure 3B delineates the 5-year survival rates based on the stage of disease. The data indicated that patients diagnosed at later stages (III and IV) had notably lower survival rates (42.4% for stage III and 19.4% for stage IV) compared with those diagnosed at earlier stages (76.5% for stage I and 67.3% for stage II). This pattern suggests a grimmer prognosis for patients with advanced-stage cancer. Significantly, the 5-year survival rate for Indigenous patients was substantially lower at 25.6%, compared with 46.0% for non-Indigenous patients. This disparity is attributable, in part, to a higher incidence of advanced-stage diagnosis among Indigenous patients (86% in stages III and IV) as opposed to 66.4% in the non-Indigenous group. These findings underscore the critical importance of early detection and intervention, particularly in the Indigenous community, to enhance patient outcomes.

Survival by subsite

In this study, we examined cases of HNACs using eight primary subsites as defined by the ICD-10-CM Diagnosis Code. These subsites include the nasopharynx, sinonasal, oral cavity, oropharynx, major and minor salivary glands, hypopharynx, larynx and cases where the primary site was unknown. Among these subsites, the oropharynx was the most common, accounting for 205 cases (30%) in total, with 130 cases among non-Indigenous patients and 75 among Indigenous patients, as shown in figure 4A.

Request permission

Figure 4

(A) Subsites of aerodigestive cancer of the head and neck showing the oropharynx as modal. (B) Kaplan-Meier (KM) curves by subsites of aerodigestive cancer of the head and neck. (C) Table representing KM’s 5-year survival analysis by subsite. Survival is expressed in probability of survival (%) and in median survival years. *Significance at p<0.05.

We conducted a 5-year survival analysis for each subsite, which is presented in figure 4B using Kaplan-Meier analysis. Salivary gland cases had the highest probability of survival, at 61.8%±1.22%, while cases originating from the nasopharynx had the lowest survival probability, at 21.4%±0.7%. Oropharyngeal cases (the most frequent subsite) showed a survival probability of 36.3%±2.1%.

Figure 4C provides a comparison of the 5-year survival rates across the different subsites, indicating an OS probability of 39.6%±2.9% and a median survival duration of 2.75 years. Statistical analyses using p values derived from two-tailed proportions z-tests for categorical parameters and Kruskal-Wallis rank tests for continuous parameters revealed significant differences in survival rates among the various subsites, with a significance threshold of p<0.05.

Risk factors

Alcohol and smoking history

The study identified smoking and alcohol consumption as primary factors associated with HNACs. Among individuals with HNACs, 91% were smokers, with a median pack-year history (PYH) of 39 (range: 30–40), and 73% had a documented history of alcohol consumption.

Additionally, a high median PYH of 39 was observed, indicating an association with a higher HNAC risk (see figure 1A).

Comorbidities

In our study, we found that the average CCI was 7.4±1.23, indicating a substantial comorbidity burden within the entire population under examination. Notably, there was no significant distinction in CCI between the Indigenous and non-Indigenous groups, implying that comorbidities may not be a prominent contributing factor to the differences in survival rates.

P16 status (in oropharyngeal subsite)

Our findings showed that among the 205 patients with oropharyngeal SCC in the NT, 61.88% were P16-negative, while 38.12% were P16-positive. Importantly, P16-positive tumours were associated with significantly better survival rates, ranging from 50% to 57%, compared with 21% to 29% for P16-negative tumours (p<0.0001). This highlights the prognostic importance of P16 in oropharyngeal SCC (figure 5A,B).

Request permission

Figure 5

(A) Analysis of rurality broken down by ethnicity. (B) Survival by rurality. Colour shows details about rurality: RA3 (outer regional) in blue, RA4 (remote) in orange and RA5 (very remote) in red. (C) The coloured table describes the analysis of P16 status in the oropharyngeal (modal) subsite broken down by ethnicity. (D) Survival analysis by ethnicity and P16 status for oropharyngeal subsite. RA, remoteness area.

The analysis of P16 status in the NT oropharyngeal SCC cohort highlights significant differences between Indigenous and non-Indigenous groups. Overall, 38.12% of the cohort tested positive for P16. However, a distinct pattern emerged showing a lower prevalence of P16 positivity among Indigenous patients as compared with their non-Indigenous counterparts. This disparity in P16 status distribution is statistically significant, as evidenced by a χ² test result of 14.36, which notably exceeds the critical value of 3.841 at a 0.05 significance level. This statistically significant finding underscores a substantial difference in the molecular characteristics of oropharyngeal SCC between these two populations.

Rurality

In our study, the majority of participants resided in either inner or outer regional areas; however, a noticeable discrepancy emerged between Indigenous and non-Indigenous patients. Notably, a higher proportion of Indigenous patients lived in areas classified as very remote (ASGS level 4 or 5) in comparison to non-Indigenous patients (28% vs 17%, p<0.001), as illustrated in figure 5C and figure 1.

Furthermore, when we conducted a survival analysis based on geographical location, a noteworthy trend emerged. Patients residing in very remote areas exhibited significantly lower survival rates, with a 5-year survival rate of only 18%, in contrast to the 45%–54% survival rates observed for those residing in rural or regional locations (p=0.0005) as shown in figure 5D. These findings emphasise the substantial impact of geographic location and access to healthcare resources on the prognosis and treatment outcomes for individuals with head and neck cancer.

Discussion

This study is the first comprehensive investigation of head and neck salivary glands and upper aerodigestive tract cancers (HNACs) in the NT, examining patient demographics, incidence, risk factors and survival outcomes for Indigenous and non-Indigenous Australians. It uses data from the NTCR database, covering the Top End and Central Australia Health Services during the study period. The research reveals significant disparities in HNACs outcomes due to the unique features of the NT. These disparities highlight health inequalities compared with the rest of Australia and differences between NT Indigenous and non-Indigenous patients, building on previous studies on HNACs among Indigenous Australians.14 16 18 The NT’s distinct features, such as its vast land area covering one-sixth of Australia, sparsely populated regions with only five remote urban centres (two of which have populations exceeding 10 000), and a significant Aboriginal and Torres Strait Islander population (28%, the highest in Australia, with 70% residing in remote communities), make it a crucial context for studying HNAC trends among NT Indigenous Australians.19

This study generates significant data to address key research questions regarding HNAC in the NT:

1. It examines a 10-year epidemiological analysis, including age-standardised incidence.

2. It conducts survival analysis, encompassing OS and subsite-specific survival.

3. It investigates risk factors influencing stage at presentation and survival in HNAC, including alcohol and smoking, comorbidities, P16 status, stage at presentation and treatment intent.

This study stands apart from previous research by encompassing a wide time frame and evaluating age-adjusted incidence rates, while also comparing risk factors and survival outcomes across diverse groups, including Indigenous and non-Indigenous Australians and individuals from regional, rural and remote areas. Out of the 524 patients diagnosed with head and neck aerodigestive tract cancers (HNAC) during the study period, the majority (82%) were male and non-Indigenous (65%), with a median age of 62 years, which is consistent with the Australian Government’s 2022 data indicating that around half of the newly diagnosed patients with head and neck cancer are male and over the age of 60.20 ,15 21 Notably, the study also incorporated a substantial cohort of Indigenous patients, numbering 186 or 35.5% of the total.

In 2017, the age-standardised incidence of head and neck cancer was reported at 16 cases per 100 000 people, with a higher incidence in males (25 per 100 000) compared with females (7.7 per 100 000).22 ,15 By 2022, the estimated lifetime risk of being diagnosed with head and neck cancer by age 85 was 1 in 58 (1.7% overall), with the risk being greater for males (1 in 39 or 2.6%) than for females (1 in 112 or 0.89%).18 In the NT, the incidence of head and neck cancer was notably higher, 325% greater than in other parts of Australia.23 ,14 Our study over a 10-year period found an incidence of 21.9 new HNAC cases per 100 000 population in the NT, without a discernible trend over time. Significantly, an OR of 11.23 with a 95% CI of 10.26 to 12.28 (p<0.0001) indicates that NT residents are more than eleven times as likely to develop HNAC compared with those in other Australian regions.

Further analysis within the NT reveals a marked difference in HNAC incidence between Indigenous and non-Indigenous populations. Specifically, Indigenous Australians in the NT have an incidence of 24.5 new cases per 100 000 population. A relative risk calculation shows that Indigenous Australians are approximately 2.3 times more likely to suffer from HNAC compared with their non-Indigenous counterparts in the NT, emphasising the heightened risk in this demographic.

The Australian Government24 reported that in 2014–2018, individuals diagnosed with HNACs (including lip) had a 72% chance (71% for males and 74% for females) and 68.2% chance in 2006–2010 (without including lip)15 of surviving for 5 years.18 In America, the 5-year survival between 1992 and 1996 was 55% without including lip. A report for the period of 2002–2006 noted survival improvement to 66%; a finding attributed to better treatment outcomes of HPV-associated HNSCC.19 Our study reveals significantly different overall 5-year survival rates: 39.6% (36.6% for males and 48% for females) overall, 25.6% for Indigenous Australians, and 46% for non-Indigenous counterparts. Five-year survival rates by subsite ranged from 21.4% for nasopharyngeal to 61.8% for salivary gland malignancies. Oropharyngeal malignancies, the most common subsite, had a 5-year survival rate of 36.3%. Lip malignancies, which usually have good survival rates, were not part of this study. Compared with studies outside the NT, our findings indicate lower survival rates for both Indigenous and non-Indigenous HNAC patients, with Indigenous patients experiencing the poorest outcomes.25

Alcohol and tobacco use are well-known risk factors for HNACs, leading to a 2.5-fold increase in the risk of head and neck cancer compared with non-smokers and non-drinkers.26 ,21 Despite the long-term downward trend in tobacco smoking and alcohol abuse in Australia since 1991 (from 24% to 11% in 2019), there is still a high prevalence of smoking and alcohol consumption in remote areas of Australia (19.6%) compared with inner regional areas (13.4%) and major cities (9.7%).27 In our study on HNACs, we found a high prevalence of tobacco and alcohol use, with 91% of patients being smokers and 73% reporting excessive alcohol consumption. This trend contrasts with the national decrease in smoking and alcohol abuse in Australia, particularly highlighting the need for targeted interventions in high-risk, remote areas.28 29 While our data shows these risk factors are significantly present in the HNACs patient population, it does not specifically differentiate between Indigenous and non-Indigenous groups. Given the poorer outcomes in Indigenous populations, further analysis is necessary to determine if these risk factors are more prevalent among Indigenous patients, which would be crucial for understanding and addressing the disparities in HNAC outcomes in the NT30 .

HNACs patients often have associated comorbidities, influenced by behaviours like smoking and high alcohol consumption, which increase disease risk.21 To assess the risk of death within 1 year of hospitalisation due to specific comorbidities, CCI is used, validated for HNAC.31 Comorbidity severity is categorised as mild (CCI 1–2), moderate (CCI 3–4) and severe (CCI>5). Patients with severe comorbidities tend to have worse survival outcomes and more complications.31 32 Our study found a mean CCI of 7.4 (indicating severe comorbidities) at presentation, with no significant difference between Indigenous and non-Indigenous patients. This underscores the need to address comorbidities in HNAC management, particularly in patients with severe comorbidities. Importantly, it challenges the common belief that worse outcomes for Indigenous patients can be solely attributed to higher comorbidities compared with non-Indigenous counterparts.

HPV-associated HNACs, especially oropharyngeal SCC, is on the rise in Australia, particularly among younger, educated and healthy individuals, potentially contributing to better survival rates in this group.33 ,34 Interestingly, we found no studies reporting the prevalence of P16 status in HNAC among the Indigenous population in Australia. P16 data were available for the oropharyngeal subsite in 93% of the patients studied, with 61.88% being P16-negative and 38.12% P16-positive. Patients with P16-positive disease had a 5-year survival of >50%, nearly double that of P16-negative disease (<28%). This aligns with Australian data.25 Analysis by ethnicity revealed a significant difference in disease aetiology between Indigenous and non-Indigenous groups, with only 9.21% of Indigenous patients having P16-positive disease compared with 29.91% in the non-Indigenous group. Overall, the NT population with HNACs is predominantly identified with P16-negative disease, associated with smoking and alcohol intake.

Foley and Varinder emphasised rurality as a significant risk factor for disparities in head and neck cancer diagnosis and treatment.35 Patients with HNAC in rural or remote areas face challenges in accessing initial care, emotional support, rehabilitation and follow-up services, exacerbated by long distances. The entire NT is classified as regional, remote or very remote (ASGL level>3), with a higher proportion of Indigenous patients in very remote areas. Our study revealed a significant trend (p=0.001) of lower survival rates (18%) for patients in very remote areas compared with rural (46%) or regional (52%) areas. Patients in very remote areas had 28% lower odds of survival (OR (95% CI) 0.72 (0.57 to 0.90)) compared with those in rural and regional areas. These findings align with Kaur et al. and underscore the need for targeted interventions to improve outcomes for remote HNAC patients.36

HNACs are severe diseases with significant morbidity and mortality. Clinical stage at diagnosis is a crucial predictor of patient outcomes. Stages I and II offer a 60%–95% chance of cure, while stages III and IV present a greater than 50% risk of recurrence or distant metastasis, leading to higher morbidity and mortality. Late-stage diagnosis and treatment delays contribute to these disparities.37 Indigenous patients are often diagnosed with advanced-stage HNAC compared with non-Indigenous patients, with studies indicating these differences.38

A study in a Northern Queensland regional hospital found 77% of Indigenous patients had advanced-stage cancer, contrasting with 66% of non-Indigenous patients.39 ,40 A report from the NT’s palliative care department noted that 70% of HNAC patients between 2011 and 2014 had advanced-stage disease, leading to palliative care as the primary approach.36 40 Our study showed that only 7.67% of patients were diagnosed at early stages (I–II), while the majority (72.33%) were diagnosed at stages III and IV. Indigenous patients were more likely to present at advanced stages (86%) compared with non-Indigenous patients (66%), resulting in over one-third of the population being offered palliative care at diagnosis, with a higher proportion among Indigenous patients (19%) than non-Indigenous patients (16%).

When we excluded patients who commenced palliative intent treatment in our OS rates for HNACs we realised a figure of 53.4% which is still lower to but more comparable to the survival outcomes reported by the Bureau Australian Statistics.41 We appreciate that reported results will likely include some patients with palliative intent treatment, but the exercise is simply to demonstrate the potential impact of early detection and timely management, which could help reduce the burden of HNACs and improve patient outcomes.17

Patients receiving curative intent treatment had a better survival rate of 53.4%, highlighting the importance of timely diagnosis and access to modalities like surgery, radiotherapy and chemotherapy. Early detection is crucial for improving HNAC outcomes. Unfortunately, many Indigenous HNACs patients in the NT present at advanced stages, leading to higher morbidity and mortality. Understanding the reasons and developing early detection strategies are vital. More Indigenous patients receive palliative care due to factors like at-risk behaviours, limited healthcare access, distrust of the system and cultural perspectives. Accessible local treatment options can encourage Indigenous patients to seek care, allowing them to stay close to family members.42–44

Addressing outcome disparities in NT’s HNACs patient population is an urgent public health priority. Identifying at-risk patients in early disease stages through prevention and potential screening measures is crucial. Research has demonstrated that simple oral cancer screening, like mouth examinations, can significantly enhance early detection and outcomes.45 Novel developments such as Point-of-care Analysis for Non-invasive Diagnosis of Oral Cancer (PANDORA) screening kits, designed for oral cancer detection in primary care for high-risk patients, hold promise for early identification, as demonstrated in the PANDORA study).46 Educating primary care providers in remote areas can aid in early patient identification and screening. Access to specialist nurses and clinicians is essential for provider support, and leveraging digital image capture and telehealth services can further enhance patient management.

Expertise and infrastructure are crucial for local treatment. Culturally sensitive care, local community engagement and involving Indigenous ambassadors can build trust and improve early presentation. While all these points of intervention can be instituted there is a cost implication to an already financially stretched NT Healthcare system. Protected funding to facilitate these targeted improvements to local service provision is imperative at both local government and federal level to achieve better outcomes for our patients and help close the healthcare gap. In summary, addressing the issue of late presentation of HNACs in NT requires a multifaceted approach that involves early detection, specialist engagement at primary care level, understanding the barriers to early presentation, and providing culturally safe and sensitive care. Improving trust and building relationships with Indigenous patients and communities can help break down barriers to early presentation, leading to improved outcomes for patients with HNACs (online supplemental addendum 1). HNACs is a flow diagram the authors hope will help achieve an efficient care model for all HNACs patients inclusive of cultural sensitivities that incorporates the findings and discussion points of this study.

Conclusion

In conclusion, this comprehensive study of Head and neck, salivary glands and aerodigestive tract cancers (HNACs) in Australia’s NT reveals significant challenges, particularly lower survival rates influenced by factors like late diagnosis, aggressive P16-negative disease profiles, and prevalent lifestyle risk factors such as smoking and alcohol use. Our findings underscore the urgent need for targeted public health interventions focusing on lifestyle modification, especially smoking cessation and alcohol use reduction, to improve patient outcomes in the NT. These strategies are vital, as they directly address modifiable risk factors that significantly impact the incidence and prognosis of HNACs.

We advocate for a patient-centred care model specifically designed for HNACs (online supplemental addendum 1), which respects the unique cultural and social backgrounds of Indigenous patients. This model should integrate the expertise of senior clinicians, foster collaborations with local elders and healthcare teams, and include Indigenous ambassadors to ensure comprehensive and culturally sensitive treatment. By enhancing early detection and treatment, this approach aims to improve survival rates and overall health outcomes for patients.

Moreover, in light of the critical role of lifestyle factors in HNACs prevalence and prognosis, we emphasise the importance of public health campaigns and education programmes in high-risk and remote areas. These interventions could substantially reduce the incidence of HNACs and lead to better health outcomes. In addition, continued research and investment are necessary to develop more effective strategies for managing HNACs, particularly for Indigenous communities in the NT. By implementing these measures, we can move towards a more equitable healthcare system that not only addresses the immediate needs of HNACs patients but also works proactively to prevent the disease and improve the quality of life for all affected individuals, especially those in marginalised communities.