ABSTRACTBackgroundThe post‐treatment survivorship period marks the transition away from acute care and poses distinct challenges for individuals with head and neck cancer (HNC). This can be especially challenging for people in regional areas who travel long distances to access care and experience unique challenges in accessing health services.AimTo investigate unmet needs and healthcare utilisation of survivors of HNC in regional areas.MethodsInvitations were sent to 619 survivors of HNC living in rural New South Wales, Australia, who were 1–15 years post‐treatment. Participants self‐reported unmet survivorship needs and the strength of these needs using the Cancer Survivors' Unmet Needs Measure. Health care utilisation over the preceding 12 months was collected using an investigator‐designed questionnaire.ResultsOne hundred and seventeen responses were received (19% response rate). Participants were predominantly male (65%), had oropharynx cancer (52%), with mean age of 70.2 years. Some 54% of participants reported at least one unmet need, and 40% rated these unmet needs as 'strong'. Top unmet needs included concern about recurrence (24%), access to local services (15%), and financial support (15%). 94% of participants reported seeing their GP, while 62% visited a dental clinic; only 10% sought professional psychosocial support despite prevalent unmet needs.ConclusionRural survivors of HNC in Australia have substantial unmet psychosocial needs yet demonstrate low utilisation of professional psychosocial support. This may reflect the limited availability or accessibility of services for this population, which could be addressed with shared models of care utilising both GP‐led and telehealth services.
AIM:Support groups are an effective way to improve quality of life (QoL) in cancer patients. Targeted support groups for head and neck cancer (HNC) can also help patients address specific treatment and survivorship challenges. The aim of this study is to understand the characteristics of existing HNC support groups in the Australian setting and identify any gaps in service provision. METHODS:Existing HNC support groups were identified through an online search and their online information was assessed by adopting the perspective of a person with HNC. Support groups were considered eligible for this study if they were based in Australia and served HNC patients, their caregivers, friends, or family members. RESULTS:Of the 26 support groups identified in the online search, more than half were based in major cities (n = 16) with three support groups across inner regional areas and three across outer regional areas. There were no support groups identified in remote areas of Australia. Most support groups took place in-person (n = 18) across a variety of physical settings, including hospitals (n = 10) and community spaces (n = 7). Topics frequently covered included: Education and information, sharing experiences and socializing, treatment and side effects, wellness and well-being, and carer support. CONCLUSIONS:There is a need for HNC support groups outside of metropolitan areas, particularly in remote Australia. We must therefore identify means of supporting current and future groups in providing and promoting their valuable service to HNC patients across all locales.
BACKGROUND:Psychosocial impacts of lung cancer screening (LCS) can cause both harm to individuals and serve as barriers to screening participation and adherence. Early data suggest that the psychosocial impacts of LCS are moderated by certain factors (e.g. sociodemographic characteristics and beliefs), but evidence synthesis is lacking. This systematic review aimed to understand individual-level risk factors for psychosocial burden during LCS as a precursor to developing strategies to identify and support participants, and improve LCS engagement. METHODS:Four databases were searched for full-text articles published in English reporting any association between participant factors and psychosocial outcomes experienced during LCS. Study quality was assessed by two independent investigators; findings were synthesised narratively. The review was pre-registered with PROSPERO and adhered to PRISMA guidelines. RESULTS:Thirty-five articles were included; most (33/35) studies were assessed at high or moderate risk of bias. Study designs were pre-post (n = 13), cross-sectional (n = 13), qualitative (n = 8) and mixed-methods (n = 1) and conducted primarily in the United States (n = 17). Psychological burden in LCS varied, and was often associated with younger age, female gender, current smoking status or increased smoking history, lower education, lower socio-economic group, not being married or co-habiting and experience with cancer. However, results were mixed, and non-significant associations were also reported across all factors. Beliefs (e.g. fatalism, stigma and expectation of LDCT results) and comorbid psychological burden were also linked to psychosocial outcomes, but evidence was sparse. Associations between risk perception, other participant factors and other psychosocial outcomes was inconclusive, likely reflecting individual biases in risk conceptualisation. CONCLUSION(S):Several participant factors are consistently reported to be associated with psychosocial impacts of LCS, though study heterogeneity and high risk of bias necessitate more robust evaluation. Further research on how perceptions, beliefs and expectations can be used to improve psychosocial outcomes during LCS is needed.
BACKGROUND:Head and neck cancer treatment often leads to trismus, a condition characterized by limited mouth opening. Exercise-based therapy is the most common intervention but there are no clear guidelines as to the optimal exercise regimen. Restorabite™ is a portable and force-regulated trismus device designed to enhance exercise adherence. This study explores the adherence to exercises using Restorabite™ in head and neck cancer patients with trismus and identifies facilitators and barriers to exercise therapy. MATERIALS AND METHODS:Mixed-methods, prospective cohort study undertaken at a quaternary oncology hospital, in Sydney Australia involving participants diagnosed with head and neck cancer diagnosed with trismus (maximal incisal opening under 35 mm). Patients underwent a 10-week individualized trismus program using Restorabite™ with weekly speech pathology reviews. Exercise adherence was tracked through categorized descriptors. Data were collected prospectively at baseline, during 10 weeks of therapy with Restorabite™, and at 6- and 12-month post-trismus exercise. Participants described facilitators of trismus therapy, and barriers to completing the prescribed exercises. Clinical documentation of these responses was then analyzed using content analysis. RESULTS:One-hundred and thirty-five participants were recruited. During the intervention 69% (n = 93) exercised as recommended, 24% (n = 32) exercised less, and 7% (n = 10) exercised more than recommended. At 6 months post-intervention, 55.5% (n = 75) exercised as recommended, 38.5% (n = 52) exercised less, and 4% (n = 6) exercised more. At 12 months, 36% (n = 49) exercised as recommended, 48% (n = 62) exercised less, and 11% (n = 15) exercised more. MIO increased from a mean of 18.6 mm at baseline, to 30.1 mm at the end of the 10-week intervention. This was maintained at 6 and 12 months (31.7 and 32.1 mm, respectively). Adherence to the exercise program was associated with greater improvement in maximum interincisal opening (p < 0.001). Facilitators of adherence included intrinsic motivation, device portability, perceived functional change, and external support tools. Barriers included cancer treatment toxicities, competing priorities, and health challenges. Positive outcomes included functional improvements, while negative outcomes included increased pain. CONCLUSIONS:Seventy-six percent of patients prescribed Restorabite™ performed trismus exercises at or more than the recommended frequency. Facilitators and barriers identified provide insights into factors influencing adherence. Future research should involve comparative studies that compare the adherence and effectiveness of different exercise programs.
Introduction Lung cancer screening (LCS) trials, targeting people with a smoking history, have demonstrated reduced mortality. How to optimally embed evidence-based smoking cessation support in LCS, including in Australia, needs to be better understood. We sought experts' perspectives to identify potential barriers and effective implementation strategies.Aims and Methods Perceptions of providing smoking cessation support in LCS were elicited in 24 focus groups and three individual interviews with clinicians, cancer screening program managers/policymakers, and researchers during 2021. We conducted framework analysis and mapped key topics to the updated Consolidated Framework for Implementation Research (CFIR).Results Experts (N = 84 participants) strongly supported capitalizing on an "opportune time" for smoking cessation and new LCS participant contact opportunities throughout the screening and assessment pathway. Many advocated for adapting existing cessation resources to the LCS setting and providing support without participant costs. Experts generally considered referral alone to established programs (eg, telephone Quitline) as insufficient, but likely helpful in follow-up, and dedicated cessation specialist roles as essential. Broader cessation messaging (via mass media/community channels) was also suggested to reinforce individualized support. Experts described inherent alignment, and an ethical responsibility, to deliver smoking cessation as a core LCS component. It was suggested that LCS-eligible participants' varied experiences of stigma, health literacy, and motivation, be considered in cessation support. Primary care support and individualized interventions were suggested to facilitate implementation.Conclusions Experts considered smoking cessation support essential in LCS. The expert-identified and multi-level implementation strategies described here can directly inform smoking cessation-specific planning for Australia's forthcoming National LCS Program.Implications The international literature includes few examples considering how best to provide smoking cessation support within a LCS program in advance of program commencement. Our analysis, using the updated CFIR, is one of the first to explore experts' perspectives within this context. Experts identified multiple implementation barriers to providing smoking cessation support within and outside of an Australian LCS program, including key work infrastructure barriers, and advocated for providing tailored interventions within this program. Our foundational work in a new targeted screening program's preimplementation phase will allow international comparisons to be made.
Understanding the barriers and facilitators for prophylactic swallowing and trismus exercises for patients undergoing radiation to the head and neck may help exercise adherence. The analysis reviews all published reports of exercise adherence with a critical appraisal following PRISMA guidelines. A total of 137 potential papers were identified; 20 studies met the inclusion criteria. The most commonly reported facilitators for swallowing and trismus exercises were regular clinician contact and online resources to reinforce instructions, set goals, and manage radiation toxicities. Social support and perceived benefit from exercises were also reported to be of help. The most common barriers to exercise were radiation toxicities, anxiety, feeling overwhelmed with information, and not understanding the reason for the exercises. Understanding facilitators and barriers to adherence is critical when designing exercise interventions for patients undergoing radiation for head and neck cancer.
OBJECTIVE:Understanding survivorship issues among people with head and neck cancer (HNC) is important as survival rates increase. Most research has focused on urban patients, leaving a gap in understanding the challenges faced by those in rural areas. This study aims to summarise the literature on survivorship needs for people with HNC in rural areas. METHODS:PubMed, PsycINFO, Scopus, Medline, CINAHL, Web of Science, and Embase were searched from database inception to 10 July 2024, with no restriction on publication period, country, or language. Data on study aims, country, methodology, and major findings related to HNC survivors in rural areas were extracted. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklists. RESULTS:Twenty-one studies met the inclusion criteria. Eight studies were qualitative, 11 were quantitative, and two adopted a mixed-methods approach. Results demonstrate the impact of complex treatments on physical (n = 13) and psychosocial (n = 14) functioning. This study also emphasises multifaceted challenges, including reduced access to specialised services, resulting in greater travel and financial burden, extending to caregivers. Hence, primary healthcare services are crucial in supporting these patients closer to home. CONCLUSIONS:Addressing the gaps in equitable post-treatment care requires an even distribution of healthcare funding and workforce in rural areas. Future research could target these issues to develop tailored interventions or models of care, such as shared care, to ease access and financial burden.
Background: Low dose computed tomography (LDCT) screening, targeted at those at high -risk, has been shown to significantly reduce lung cancer mortality and detect cancers at an early stage. Practical, attitudinal and demographic factors can inhibit screening participation in high -risk populations. This study aimed to explore stakeholders' views about barriers and enablers (determinants) to participation in lung cancer screening (LCS) in Australia. Methods: Twenty-four focus groups (range 2-5 participants) were conducted in 2021 using the Zoom platform. Participants were 84 health professionals, researchers, policy makers and program managers of current screening programs. Focus groups consisted of a structured presentation with facilitated discussion lasting about 1 hour. The content was analysed thematically and mapped to the Consolidated Framework for Implementation Research (CFIR). Results: Screening determinants were identified across each stage of the proposed screening and assessment pathway. Challenges included participant factors such as encouraging participation for individuals at high -risk, whilst ensuring that access and equity issues were carefully considered in program design. The development of awareness campaigns that engaged LCS participants and health professionals, as well as streamlined referral processes for initial entry and follow-up, were strongly advocated for. Considering practical factors included the use of mobile vans in convenient locations. Conclusions: Participants reported that LCS in Australia was acceptable and feasible. Participants identified a complex set of determinants across the proposed screening and assessment pathway. Strategies that enable the best chance for program success must be identified prior to implementation of a national LCS program.
Rural people with head and neck cancers (HNC) are likely to experience poorer health outcomes due to limited access to health services, so many benefit from models of care that account for rurality. The aim of this review was to synthesise literature on models of care in this population. Studies were identified using seven databases: PubMed, PsycINFO, Scopus, Embase, CINAHL, Medline, and Web of Science. Studies that tested or reported a model of care in rural HNC survivors were included. Data on characteristics and outcomes of the models were synthesised according to the domains in the Cancer Survivorship Care Quality Framework, and study quality was appraised. Seventeen articles were included. Eight were randomised controlled trials (seven with a control group and one single-arm study). Three models were delivered online, nine via telehealth, and five in-person. Majority were led by nurses and allied health specialists and most addressed management of physical (n = 9) and psychosocial effects (n = 6), while only a few assessed implementation outcomes such as cost-effectiveness. None evaluated the management of chronic health conditions. Positive outcomes were reported for domains of survivorship care that were measured; however, further evaluation of models of care for rural people with HNC is needed to assess effectiveness across all domains of care. Rural cancer survivors are a diverse population with unique needs. Alternative models of care such as shared care, or models personalised to the individual, could be considered to reduce disparities in access to care and outcomes.
Purpose The human papillomavirus (HPV) is well recognised as a factor in developing oropharyngeal cancer (OPC). A booklet for HPV-OPC patients aimed to deliver evidence-based messages in everyday language, in a way to minimise negative psychological impacts on patients. Our study explored the suitability of the booklet for use. Methods Participants were recruited through social media and interviewed via Zoom. Participants were shown the booklet and a think-aloud method elicited real-time reactions to the content. Responses were analysed for each section and coded as either for or against for content, with other responses thematically analysed using NVivo. Results The sample comprised 24 participants: patients ( n = 19) who completed treatment for HPV-OPC and partners of survivors of HPV-OPC ( n = 5). All participants found the booklet useful, and most wished the resource had been available previously. Some indicated the information was new to them. The majority agreed the booklet would be best delivered by their specialist at point of diagnosis and would be a useful resource for friends and family. Most participants gave feedback on improvements to the booklet in terms of comprehension and design. Overall, participants found the content easy to understand. Most participants found that it helped to reduce shame and stigma associated with HPV as a sexually transmitted infection. Conclusion An evidence-based booklet for HPV-OPC patients and their partners is acceptable. Implementation may be feasible in routine clinical practice, specifically at time of diagnosis. Adapting the content will help optimise the efficacy of the booklet in facilitating communication between all stakeholders.
RATIONALE:Head and neck surgery services are increasingly being centralised in Australia. Outreach models can overcome burdens of travel that patients in regional and rural areas experience when attending routine appointments, by providing services closer to home.AIM:To explore patient-reported experiences and satisfaction with regional outreach services for head and neck surgery in Australia.METHODS:Patients who attended two regional outreach clinics in New South Wales (NSW), Australia, were surveyed over a 6-month period. Patients completed the Outpatient Cancer Clinics Survey (2020 version) that explored perceptions and experiences of the clinic. Patients with cancer were asked to complete the Edmonton Symptom Assessment System and the Communication and Attitudinal Self-Efficacy scale. Descriptive statistics and analysis of data was performed, and results were compared to the NSW statewide Outpatient Cancer Clinics Survey (2020). Content analysis of free text responses was performed.RESULTS:Some 128 patients responded (56% response rate; mean age 67.2 years, 46.1% female). Compared to the 2020 NSW survey, a higher proportion of patients in our cohort responded positively to 14 of the 26 questions, with the greatest differences observed for questions regarding waiting area comfort (+12.1%, p = 0.008), being informed about different treatment options (+9.5%, p = 0.04), and issues relating to parking (+9.5%, p = 0.03). A lower proportion of our sample responded positively to the question about whether health professionals knew enough about their medical history (-19.3%, p < 0.001). Respondents appreciated having a local clinic that helped them avoid travel to major cities and associated expenses and highlighted benefits of expert consultation and timeliness of investigations. However, cost of appointments and level of reimbursements remain barriers for some patients.CONCLUSIONS:Patients had a high level of satisfaction with regional outreach clinics for head and neck surgery across most domains, indicating patients highly value this service.
BACKGROUND:Digital surgical planning (DSP) has revolutionized the preparation and execution of the management of complex head and neck pathologies. The addition of virtual reality (VR) allows the surgeon to have a three-dimensional experience with six degrees of freedom for visualizing and manipulating objects. This pilot study describes the participants experience with the first head and neck reconstructive VR-DSP platform.METHODS:An original VR-DSP platform has been developed for planning the ablation and reconstruction of head and neck pathologies. A prospective trial utilizing this platform involving reconstructive surgeons was performed. Participants conducted a simulated VR-DSP planning session, pre- and post-questionnaire as well as audio recordings allowing for qualitative analysis.RESULTS:Thirteen consultant reconstructive surgeons representing three surgical backgrounds with varied experience were recruited. The majority of surgeons had no previous experience with VR. Based on the system usability score, the VR-DSP platform was found to have above average usability. The qualitative analysis demonstrated the majority had a positive experience. Participants identified some perceived barriers to implementing the VR-DSP platform.CONCLUSIONS:Virtual reality-digital surgical planning is usable and acceptable to reconstructive surgeons. Surgeons were able to perform the steps in an efficient time despite limited experience. The addition of VR offers additional benefits to current VSP platforms. Based on the results of this pilot study, it is likely that VR-DSP will be of benefit to the reconstructive surgeon.
BACKGROUND:Lung cancer is the number one cause of cancer death worldwide. Although international trials demonstrate that targeted screening using low dose computed tomography (LDCT) significantly reduces lung cancer mortality, implementation of screening in the high-risk population presents complex health system challenges that need to be thoroughly understood to support policy change.AIM:To elicit health care providers' and policymakers' views about the acceptability and feasibility of lung cancer screening (LCS) and barriers and enablers to implementation in the Australian setting.METHODS:We conducted 24 focus groups and three interviews (22 focus groups and all interviews online) in 2021 with 84 health professionals, researchers, and current cancer screening program managers and policy makers across all Australian states and territories. Focus groups included a structured presentation about lung cancer and screening and lasted approximately one hour each. A qualitative approach to analysis was used to map topics to the Consolidated Framework for Implementation Research.RESULTS:Nearly all participants considered LCS to be acceptable and feasible but identified a wide range of implementation challenges. Topics (five specific to health systems and five cross-cutting with participant factors) identified were mapped to CFIR constructs, of which 'readiness for implementation', 'planning' and 'executing' were most salient. Health system factor topics included delivery of the LCS program, cost, workforce considerations, quality assurance and complexity of health systems. Participants strongly advocated for streamlined referral processes. Practical strategies to address equity and access, such as using mobile screening vans, were emphasised.CONCLUSIONS:Key stakeholders readily identified the complex challenges associated with the acceptability and feasibility of LCS in Australia. The barriers and facilitators across health system and cross-cutting topics were clearly elicited. These findings are highly relevant to the scoping of a national LCS program by the Australian Government and a subsequent recommendation for implementation.
Cutaneous and Oral Squamous Cell Carcinoma (SCC) is the second most common skin and most common mucosal cancers, respectively. A subset of head and neck SCC are at high-risk of local recurrence or developing metastases. The prognosis of patients with metastatic and recurrent HNSCC is poor, with a median survival rate of less than 12-months in many instances. The immune system plays a critical role in the control of many malignancies including SCC. Recent clinical trials with immune checkpoint inhibitors (ICI) demonstrate response in 47% of patients with advanced cutaneous SCC (cSCC) but only 19% in patients with advanced oral SCC (oSCC). In this study we used high-dimensional imaging mass cytometry to examine up to 40 parameters to compare the tumor microenvironment of cSCC and oSCC. In cSCC we discovered that patient tumors contained immune signatures and individual cell interactions that link progression to immune status in patients absent of clinical immune suppression (ACIS). There were significant differences in the CD4+, CD8+ T cell and leukocyte immune composition of primary tumors that never progressed compared to primary tumors from DP patients ACIS. We also found significant spatial differences in primary tumors from these patients including cell-interactions and specific regions present in the TME landscape. Cellular regional analysis of the TME showed squamous cell-enriched tumor regions associated with DP tumors. In oSCC, patients who did not respond to ICI showed significantly higher infiltrates of proliferating CD4+ Regulatory T cells (Tregs). NK cells and Central Memory Cytotoxic T cells were found to be significantly higher in patients who responded to therapy. Furthermore, we identified key spatial interactions including a subset of Tregs significantly interacting with specific PMN-myeloid derived suppressor cells (MDSC) in patients who failed to respond to PD-1 ICI. Interestingly, these Tregs and PMN-MDSCs were found to significantly avoid each other in the TME of patients who responded to PD-1 ICI. Mapping the immune landscape of human tumors could provide insight into the role of immune cells in disease progression and response and resistance to therapy. The findings of this research offers a clear pathway to determine clinical outcomes based on a patients TME signature. Citation Format: Angela L. Ferguson, Thomas Beddow, Ashleigh Sharman, Ruth O. Allen, Thomas Ye, Jenny Lee, Tsu-Hui (Hubert) Low, Sydney Ch'ng, Carsten Palme, Bruce Ashford, Marie Ranson, Michael Elliot, Jonathan R. Clark, Ellis Patrick, Umaimainthan Palendira, Ruta Gupta. High-dimensional spatial analysis of the tumor-microenvironment to determine metastatic disease progression and response and resistance to therapy in head and neck cancer [abstract]. In: Proceedings of the AACR-AHNS Head and Neck Cancer Conference: Innovating through Basic, Clinical, and Translational Research; 2023 Jul 7-8; Montreal, QC, Canada. Philadelphia (PA): AACR; Clin Cancer Res 2023;29(18_Suppl):Abstract nr PR12.
Tobacco smoking prevalence in Australia has been substantially reduced through evidence-based tobacco control policy. Nevertheless, smoking remains the leading cause of premature mortality and over the next two decades an estimated 62% of all smoking-attributable Australian cancer deaths will be from lung cancer. A national program of lung cancer screening (LCS) via low-dose computed tomography is being explored, including smoking cessation support for participants. Various approaches to providing smoking cessation support (e.g., wholly embedded, wholly external, or hybrid) have been implemented within LCS settings.