Australia’s National Cervical Screening Program recommends 5-yearly HPV screening for those aged 25–74 years, with around three-quarters of eligible participants being screened in the past 5 years. Some population groups in the community are under-screened, missing opportunities to prevent cervical cancer or detect it early. This qualitative study examined past experiences with or barriers to engaging in cervical screening with a speculum for women and people with a cervix from specific under- and never-screened groups and aimed to understand the underlying socio-ecological factors that lead to under- and never-screening. We conducted 55 semi-structured interviews between October 2023 and November 2024 with screen-eligible women and people with a cervix, including those from refugee backgrounds; who identify as LGBTQ+ ; with physical and/or sensory disability; and/or from Pacific Islander communities. Findings were mapped to the socio-ecological framework and indicate that intrapersonal (e.g., body shyness and discomfort), interpersonal (e.g., negative interactions with healthcare providers), and health system (e.g., inaccessible and non-inclusive services) factors impacted screening decisions. Achieving genuine equity for cervical screening requires more awareness around the importance of screening, trauma-informed and person-centred care, and addressing wider systemic barriers to ensure that everyone is given the choice to screen in a way that is accessible, culturally-sensitive, and inclusive.
Since 2022, Australia’s National Cervical Screening Program has recommended that anyone eligible for cervical screening should be offered the choice of HPV testing on either a self-collected vaginal sample, or a clinician-collected sample. This choice provides the potential to address some screening barriers for under- and never-screened women and people with a cervix. In this qualitative study we aimed to understand the acceptability of self-collection for individuals from under-and never-screened groups, and its potential to improve equitable access to screening through the national program. Fifty-five semi-structured interviews were conducted between October 2023-November 2024 with screen-eligible women and people with a cervix from the LGBTQ+ community, refugee backgrounds, Pacific Islander communities, and those with physical and/or sensory disability. Data were thematically analysed using the Theoretical Framework of Acceptability. Most participants had a positive view of self-collection and could see its benefits, particularly its capacity to increase privacy and autonomy. Self-collection was seen as beneficial for those who experienced issues related to body shyness and discomfort about being undressed in front of healthcare providers. Participants placed high value on having options for cervical screening; however, many preferred clinician-collection due to low self-efficacy in collecting a sample themselves and concerns about the accuracy of the test. Additionally, some participants with physical and/or sensory disabilities highlighted dexterity and/or mobility challenges that made self-collection difficult or the swab difficult to use. Participants agreed there was a need for community-tailored information sessions and broader campaigns about self-collection as many communities were still unaware of this option. While self-collection has the potential to expand screening accessibility and may offer individual benefits, increased awareness of its availability and attention to identified barriers are needed to ensure that everyone is given true choice in the way they screen.
The National Lung Cancer Screening Program is commencing in Australia in July 2025. This significant public health initiative will maximise earlier detection of lung cancer and improve outcomes for many Australians. However, the adoption of a screening program for a disease that is stigmatised, given the known links between tobacco smoking and lung cancer, creates barriers for participation. In this perspective, we argue the need to challenge public rhetoric around smoking being a 'choice' and the importance of dialogue that is free of judgement and blame towards individuals. We briefly examine initiatives that have been implemented to reduce public stigma and highlight the multi-level considerations to ensure that everyone, regardless of having smoked or not, receives the quality care and support that they deserve.
OBJECTIVES:Many lung cancer screening (LCS) programs are in development following landmark trials demonstrating the effectiveness of screening for reducing lung cancer mortality. Psychosocial aspects are important considerations for LCS services, both for harms to participants and as barriers to appropriate uptake. This study investigated the psychosocial impacts and determinants of LCS for screening participants from the perspective of an international, multidisciplinary sample of healthcare professionals. METHODS:Semi-structured interviews were conducted with health professionals involved in LCS delivery or design, or with LCS-eligible populations (including primary care practitioners, respiratory physicians, nurses, trial assistants/coordinators, and researchers). Participants were sampled to include perspectives across different countries, trials/programs, and policy landscapes. Data was analysed thematically. RESULTS:Twenty-seven participants were interviewed. Most were from England (n = 11) and Australia (n = 10), with representation across seven established LCS trials/programs. Themes generated were: (a) anxiety and fear are central to screening experiences; (b) positive psychological responses to LCS are common; (c) ingrained lung cancer fatalism underpins anxiety; (d) smoking stigma is pervasive and interacts with LCS invitation; (e) influence of family and community; (f) issues specific to LCS-eligible populations; and (g) psychosocial impacts are diverse and moderated by certain factors. Themes each included psychosocial barriers to engagement (e.g., fear of cancer, nihilism, lack of social support). Key service design recommendations were developed from findings (e.g., public awareness campaigns to reduce fatalistic perceptions). CONCLUSION:Psychosocial responses to LCS are diverse, complex and uniquely influenced by smoking-based eligibility criteria and lung cancer fatalism. Similarities in perspectives across an international sample of multidisciplinary healthcare professionals suggest the potential for best-practice guidelines for optimising psychosocial outcomes and determinants of LCS. PRACTICE IMPLICATIONS:Findings include key recommendations to inform LCS practice and service design. Further research investigating and testing communication strategies targeting (a) stigma and fatalism, and (b) risk and ineligibility, is needed.
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.
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.
Objectives Patient reported experience measures (PREMs) are tools often utilised in hospitals to support quality improvements and to provide objective feedback on care experiences. Less commonly PREMs can be used to support consumers choices in their hospital care. Little is known about the experience and views of the Australian consumer regarding PREMs nor the considerations these consumers have when they need to make decisions about attending hospital. This study aimed to explore consumer awareness of PREMs, consumer attitudes towards PREMs and the utility of PREMs as a decision-making tool in accessing hospital care. Methods Qualitative study involving semi-structured interviews conducted over the phone. Participants (n = 40) were recruited from across Australia and purposively sampled according to key characteristics: holding private health insurance, > 30-years of age, may have accessed private hospital care in the past year, variety of educational and cultural backgrounds, and if urban or rural residing. Interviews were audio-recorded, transcribed, and analysed thematically. Results Four overarching themes and six subthemes were identified from the data. Major findings were that prior awareness of PREMs was limited; however, many had filled in a PREM either for themselves or for someone they cared for following a hospital stay. Most respondents preferred to listen to experience of self or family/friends or the recommendation of their physician when choosing a hospital to attend. Participants appeared to be more interested in the treating clinician than the hospital with this clinician often dictating the hospital or hospital options. If provided choice in hospital, issues of additional costs, timeliness of treatment and location were important factors. Conclusion While PREMs were considered a possible tool to assist in hospital decision-making process, previous hospital experiences, the doctor and knowing up-front cost are an overriding consideration for consumers when choosing their hospital. Consideration to format and presentation of PREMs data is needed to facilitate understanding and allow meaningful comparisons. Future research could examine the considerations of those consumers who primarily access public healthcare facilities and how to improve the utility of PREMs.
Objectives The study aims to investigate the perceptions of patients with thyroid cancer on the potential impact of diagnosis and treatment delays during the COVID-19 pandemic.Design This study involved qualitative semi-structured telephone interviews. The interviews were transcribed verbatim, analysed using the thematic framework analysis method and reported using the Consolidated Criteria for Reporting Qualitative Research.Setting Participants in the study were treated and/or managed at hospital sites across New South Wales and Victoria, Australia.Participants 17 patients with thyroid cancer were interviewed and included in the analysis (14 females and 3 males).Results The delays experienced by patients ranged from <3 months to >12 months. The patients reported about delays to diagnostic tests, delays to surgery and radioactive iodine treatment, perceived disease progression and, for some, the financial burden of choosing to go through private treatment to minimise the delay. Most patients also reported not wanting to experience delays any longer than they did, due to unease and anxiety.Conclusions This study highlights an increased psychological burden in patients with thyroid cancer who experienced delayed diagnosis and/or treatment during COVID-19. The impacts experienced by patients during this time may be similar in the case of other unexpected delays and highlight the need for regular clinical review during delays to diagnosis or treatment.
Abstract Objective Patient reported experience measures (PREMs) are common tools utilised in hospitals to support quality improvements, allow consumers to provide feedback on care experiences and can be used to support consumers’ hospital selections. This study aimed to understand the views and opinions of private hospital staff on PREM use and the utility of PREMs as a consumer decision-making tool. Method Qualitative, semi-structured interview study conducted via telephone between March-June 2023. Participants (n = 10) were recruited from major private healthcare providers in Australia with half representing hospital-based staff and the other half corporate head office staff who work in patient experience and quality. Interviews were audio-recorded, transcribed, and analysed thematically. Results PREM benefits included an understanding of patient experience that improved provision of patient centred care with feedback acting as catalyst for change, to corporate-level strategic initiatives that address specific issues. Drawbacks of PREM reporting included concerns around skewed results by biased respondents, and completion based on hard to alter items (e.g., infrastructure) or on matters outside of hospital control (e.g., insurance). Staff had mixed reactions to consumers using PREMs results when selecting a hospital, some advocated for transparency while others feared consumers would misinterpret the data. Conclusions Improved real-time reporting of PREMs, learning from other industries about recording customer experience, and mandatory reporting by private hospitals could further the benefits of PREM measurement in private healthcare. Recognised was the need for PREMs to be displayed in a readily understood way so those with limited health literacy can correctly interpret.
Background Older women receive no information about why Australia’s breast screening program (BreastScreen) invitations cease after 74 years. We tested how providing older women with the rationale for breast screening cessation impacted informed choice (adequate knowledge; screening attitudes aligned with intention). Methods In a three-arm online randomized trial, eligible participants were females aged 70–74 years who had recently participated in breast screening (within 5 years), without personal breast cancer history, recruited through Qualtrics. Participants read a hypothetical scenario in which they received a BreastScreen letter reporting no abnormalities on their mammogram. They were randomized to receive the letter: (1) without any rationale for screening cessation (control); (2) with screening cessation rationale in printed-text form (e.g., downsides of screening outweigh the benefits after age 74); or (3) with screening cessation rationale presented in an animation video form. The primary outcome was informed choice about continuing/stopping breast screening beyond 74 years. Results A total of 376 participant responses were analyzed. Compared to controls ( n = 122), intervention arm participants (text [ n = 132] or animation [ n = 122]) were more likely to make an informed choice (control 18.0%; text 32.6%, p = .010; animation 40.5%, p < .001). Intervention arm participants had more adequate knowledge (control 23.8%; text 59.8%, p < .001; animation 68.9%, p < .001), lower screening intentions (control 17.2%; text 36.4%, p < .001; animation 49.2%, p < .001), and fewer positive screening attitudes regarding screening for themselves in the animation arm, but not in the text arm (control 65.6%; text 51.5%, p = .023; animation 40.2%, p < .001). Conclusions Providing information to older women about the rationale for breast cancer screening cessation increased informed decision-making in a hypothetical scenario. This study is an important first step in improving messaging provided by national cancer screening providers direct to older adults. Further research is needed to assess the impact of different elements of the intervention and the impact of providing this information in clinical practice, with more diverse samples. Trial Registration ANZCTRN12623000033640.
Background Older adults should be supported to make informed decisions about cancer screening. However, it is unknown how general practitioners (GPs) in Australia communicate about cancer screening with older people. Aim To investigate GPs’ views and experiences of communicating about cancer screening (breast, cervical, prostate, and bowel) with older people (≥70 years). Design and setting Qualitative, semi-structured interviews, Australia. Method Interviews were conducted with GPs practising in Australia (n = 28), recruited through practice-based research networks, primary health networks, social media, and email invitation. Interviews were audio-recorded and analysed thematically using Framework Analysis. Results Findings across GPs were organized into 3 themes: (i) varied motivation to initiate cancer screening discussions; some GPs reported that they only initiated screening within recommended ages (<75 years), others described initiating discussions beyond recommended ages, and some experienced older patient-initiated discussions; (ii) GPs described the role they played in providing screening information, whereby detailed discussions about the benefits/risks of prostate screening were more likely than other nationally funded screening types (breast, cervical, and bowel); however, some GPs had limited knowledge of recommendations and found it challenging to explain why screening recommendations have upper ages; (iii) GPs reported providing tailored advice and discussion based on personal patient preferences, overall health/function, risk of cancer, and previous screening. Conclusions Strategies to support conversations between GPs and older people about the potential benefits and harms of screening in older age and rationale for upper age limits to screening programmes may be helpful. Further research in this area is needed.
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.
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.