47 results on '"Smit, Amelia"'
Search Results
2. A 10-year update to the principles for clinical trial data sharing by pharmaceutical companies: perspectives based on a decade of literature and policies
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Modi, Natansh D., Kichenadasse, Ganessan, Hoffmann, Tammy C., Haseloff, Mark, Logan, Jessica M., Veroniki, Areti A., Venchiarutti, Rebecca L., Smit, Amelia K., Tuffaha, Haitham, Jayasekara, Harindra, Manning-Bennet, Arkady, Morton, Erin, McKinnon, Ross A., Rowland, Andrew, Sorich, Michael J., and Hopkins, Ashley M.
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- 2023
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3. Ethical, legal, and social issues related to genetics and genomics in cancer: A scoping review and narrative synthesis
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Smit, Amelia K., Gokoolparsadh, Akira, McWhirter, Rebekah, Newett, Lyndsay, Milch, Vivienne, Hermes, Azure, McInerney-Leo, Aideen, and Newson, Ainsley J.
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- 2024
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4. Long-term cost-effectiveness of a melanoma prevention program using genomic risk information compared with standard prevention advice in Australia
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Newson, Ainsley J., Morton, Rachael L., Kimlin, Michael, Keogh, Louise, Law, Matthew, Kirk, Judy, Dobbinson, Suzanne J., Kanetsky, Peter, Mann, Graham, Dawkins, Hugh, Savard, Jacqueline, Dunlop, Kate, Trevena, Lyndal, Jenkins, Mark, Allen, Martin, Butow, Phyllis, Wordsworth, Sarah, Lo, Serigne, Low, Cynthia, Smit, Amelia K., Espinoza, David, Cust, Anne E., Law, Chi Kin, Fernandez-Penas, Pablo, Nieweg, Omgo E., and Menzies, Alexander M.
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- 2023
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5. Targeted Screening for Cancer: Learnings and Applicability to Melanoma: A Scoping Review.
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Zheng, Lejie, Smit, Amelia K., Cust, Anne E., and Janda, Monika
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MEDICAL screening , *EARLY detection of cancer , *CANCER prevention , *OVARIAN cancer , *BREAST cancer - Abstract
This scoping review aims to systematically gather evidence from personalized cancer-screening studies across various cancers, summarize key components and outcomes, and provide implications for a future personalized melanoma-screening strategy. Peer-reviewed articles and clinical trial databases were searched for, with restrictions on language and publication date. Sixteen distinct studies were identified and included in this review. The studies' results were synthesized according to key components, including risk assessment, risk thresholds, screening pathways, and primary outcomes of interest. Studies most frequently reported about breast cancers (n = 7), followed by colorectal (n = 5), prostate (n = 2), lung (n = 1), and ovarian cancers (n = 1). The identified screening programs were evaluated predominately in Europe (n = 6) and North America (n = 4). The studies employed multiple different risk assessment tools, screening schedules, and outcome measurements, with few consistent approaches identified across the studies. The benefit–harm assessment of each proposed personalized screening program indicated that the majority were feasible and effective. The establishment of a personalized screening program is complex, but results of the reviewed studies indicate that it is feasible, can improve participation rates, and screening outcomes. While the review primarily examines screening programs for cancers other than melanoma, the insights can be used to inform the development of a personalized melanoma screening strategy. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Impact of personal genomic risk information on melanoma prevention behaviors and psychological outcomes: a randomized controlled trial
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Smit, Amelia K., Allen, Martin, Beswick, Brooke, Butow, Phyllis, Dawkins, Hugh, Dobbinson, Suzanne J., Dunlop, Kate L., Espinoza, David, Fenton, Georgina, Kanetsky, Peter A., Keogh, Louise, Kimlin, Michael G., Kirk, Judy, Law, Matthew H., Lo, Serigne, Low, Cynthia, Mann, Graham J., Reyes-Marcelino, Gillian, Morton, Rachael L., Newson, Ainsley J., Savard, Jacqueline, Trevena, Lyndal, Wordsworth, Sarah, and Cust, Anne E.
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- 2021
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7. Family communication about genomic sequencing: A qualitative study with cancer patients and relatives
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Smit, Amelia K, Bartley, Nicci, Best, Megan C, Napier, Christine E, Butow, Phyllis, Newson, Ainsley J, Tucker, Kathy, Ballinger, Mandy L, Thomas, David M, Jacobs, Chris, Meiser, Bettina, Goldstein, David, Savard, Jacqueline, and Juraskova, Ilona
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- 2021
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8. School-based interventions to improve sun-safe knowledge, attitudes and behaviors in childhood and adolescence: A systematic review
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Reyes-Marcelino, Gillian, Wang, Rhona, Gultekin, Sinem, Humphreys, Lauren, Smit, Amelia K., Sharman, Ashleigh R., St Laurent, Andrea G., Evaquarta, Rosa, Dobbinson, Suzanne J., and Cust, Anne E.
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- 2021
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9. Precision Public Health Initiatives in Cancer: Proceedings from the Transdisciplinary Conference for Future Leaders in Precision Public Health
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Allen, Caitlin G., Turbitt, Erin, Smit, Amelia K., Passero, Lauren E., Olstad, Dana Lee, Hatch, Ashley, Landry, Latrice, and Roberts, Megan C.
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- 2022
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10. Adherence to melanoma screening and surveillance skin check schedules tailored to personal risk.
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Perera, Methmi M., Smit, Amelia K., Smith, Andrea L., Gallo, Bruna, Tan, Ivy, Espinoza, David, Laginha, Bela I., Guitera, Pascale, Martin, Linda K., and Cust, Anne E.
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SKIN cancer ,RESERVATION systems ,EARLY detection of cancer ,MEDICAL screening ,MELANOMA ,PATIENT autonomy - Abstract
Population‐wide skin cancer screening is not currently recommended in most countries. Instead, most clinical guidelines incorporate risk‐based recommendations for skin checks, despite limited evidence around implementation and adherence to recommendations in practice. We aimed to determine adherence to personal risk‐tailored melanoma skin check schedules and explore reasons influencing adherence. Patients (with/without a previous melanoma) attending tertiary dermatology clinics at the Melanoma Institute Australia, Sydney, Australia, were invited to complete a melanoma risk assessment questionnaire via iPad and provided with personal risk information alongside a risk‐tailored skin check schedule. Data were collected from the risk tool, clinician‐recorded data on schedule deviations, and appointment booking system. Post‐consultation, we conducted semi‐structured interviews with patients and clinic staff. We used a convergent segregated mixed methods approach for analysis. Interviews were audio recorded, transcribed and data were analysed thematically. Participant data were analysed from clinic records (n = 247) and interviews (n = 29 patients, 11 staff). Overall, there was 62% adherence to risk‐tailored skin check schedules. In cases of non‐adherence, skin checks tended to occur more frequently than recommended. Decisions to deviate were similarly influenced by patients (44%) and clinicians (56%). Themes driving non‐adherence among patients included anxiety and wanting autonomy around decision‐making, and among clinicians included concerns around specific lesions and risk estimate accuracy. There was moderate adherence to a clinical service program of personal risk‐tailored skin check recommendations. Further adherence may be gained by incorporating strategies to identify and assist patients with high levels of anxiety and supporting clinicians to communicate risk‐based recommendations with patients. [ABSTRACT FROM AUTHOR]
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- 2024
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11. A review of skin cancer primary prevention activities in primary care settings.
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Singh, Nehal, Dunlop, Kate L. A., Woolley, Nikki, Vashishtha, Tracey Wills, Damian, Diona L., Vuong, Kylie, Cust, Anne E., and Smit, Amelia K.
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SKIN cancer ,CANCER prevention ,ULTRAVIOLET radiation ,PRIMARY care ,SKIN disease prevention - Abstract
Objectives: Skin cancer is highly preventable through primary prevention activities such as avoiding ultraviolet radiation exposure during peak times and regular use of sun protection. General practitioners (GPs) and primary care nurses have key responsibilities in promoting sustained primary prevention behaviour. We aimed to review the evidence on skin cancer primary prevention activities in primary care settings, including evidence on feasibility, effectiveness, barriers and enablers. Study type: Rapid review and narrative synthesis. Methods: We searched published literature from January 2011 to October 2022 in Embase, Medline, PsychInfo, Scopus, Cochrane Central and CINAHL. The search was limited to skin cancer primary prevention activities within primary care settings, for studies or programs conducted in Australia or countries with comparable health systems. Analysis of barriers and enablers was informed by an implementation science framework. Results: A total of 31 peer-reviewed journal articles were included in the review. We identified four main primary prevention activities: education and training programs for GPs; behavioural counselling on prevention; the use of novel risk assessment tools and provision of risk-tailored prevention strategies; and new technologies to support early detection that have accompanying primary prevention advice. Enablers to delivering skin cancer primary prevention in primary care included pairing preventive activities with early detection activities, and access to patient resources and programs that fit with existing workflows and systems. Barriers included unclear requirements for skin cancer prevention counselling, competing demandswithin the consultation and limited access to primary care services, especially in regional and remote areas. Conclusions: These findings highlight potential opportunities for improving skin cancer prevention activities in primary care. Ensuring ease of program delivery, integration with early detection and availability of resources such as risk assessment tools are enablers to encourage and increase uptake of primary prevention behaviours in primary care, for both practitioners and patients. [ABSTRACT FROM AUTHOR]
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- 2024
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12. Advancing precision public health using human genomics: examples from the field and future research opportunities
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Roberts, Megan C., Fohner, Alison E., Landry, Latrice, Olstad, Dana Lee, Smit, Amelia K., Turbitt, Erin, and Allen, Caitlin G.
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- 2021
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13. Can patient-led surveillance detect subsequent new primary or recurrent melanomas and reduce the need for routinely scheduled follow-up? A protocol for the MEL-SELF randomised controlled trial
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Ackermann, Deonna M., Smit, Amelia K., Janda, Monika, van Kemenade, Cathelijne H., Dieng, Mbathio, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Irwig, Les, Hersch, Jolyn K., Guitera, Pascale, Soyer, H. Peter, Mar, Victoria, Saw, Robyn P. M., Low, Donald, Low, Cynthia, Drabarek, Dorothy, Espinoza, David, Emery, Jon, Murchie, Peter, Thompson, John F., Scolyer, Richard A., Azzi, Anthony, Lilleyman, Alister, and Bell, Katy J. L.
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- 2021
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14. Risk attitudes and sun protection behaviour: Can behaviour be altered by using a melanoma genomic risk intervention?
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Morton, Rachael L., Asher, Rebecca, Peyton, Edward, Tran, Anh, Smit, Amelia K., Butow, Phyllis N., Kimlin, Michael G., Dobbinson, Suzanne J., Wordsworth, Sarah, Keogh, Louise, and Cust, Anne E.
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- 2019
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15. Acceptability of risk-tailored cancer screening among Australian GPs: a qualitative study.
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LA Dunlop, Kate, Smit, Amelia K, Keogh, Louise A, Newson, Ainsley J, Rankin, Nicole M, and Cust, Anne E
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EARLY detection of cancer ,MEDICAL screening ,QUALITATIVE research ,PROFESSIONAL education ,SEMI-structured interviews - Abstract
Background: Cancer screening that is tailored to individual risk has the potential to improve health outcomes and reduce screening-related harms, if implemented well. However, successful implementation depends on acceptability, particularly as this approach will require GPs to change their practice. Aim: To explore Australian GPs' views about the acceptability of risk-tailored screening across cancer types and to identify barriers to and facilitators of implementation. Design and setting: A qualitative study using semi-structured interviews with Australian GPs. Method: Interviews were carried out with GPs and audio-recorded and transcribed. Data were first analysed inductively then deductively using an implementation framework. Results: Participants (n = 20) found risk-tailored screening to be acceptable in principle, recognising potential benefits in offering enhanced screening to those at highest risk. However, they had significant concerns that changes in screening advice could potentially cause confusion. They also reported that a reduced screening frequency or exclusion from a screening programme for those deemed low risk may not initially be acceptable, especially for common cancers with minimally invasive screening. Other reservations about implementing risk-tailored screening in general practice included a lack of high-quality evidence of benefit, fear of missing the signs or symptoms of a patient's cancer, and inadequate time with patients. While no single preferred approach to professional education was identified, education around communicating screening results and risk stratification was considered important. Conclusion: GPs may not currently be convinced of the net benefits of risk-tailored screening. Development of accessible evidence-based guidelines, professional education, risk calculators, and targeted public messages will increase its feasibility in general practice. [ABSTRACT FROM AUTHOR]
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- 2024
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16. Implementation considerations for offering personal genomic risk information to the public: a qualitative study
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Smit, Amelia K., Reyes-Marcelino, Gillian, Keogh, Louise, Dunlop, Kate, Newson, Ainsley J., and Cust, Anne E.
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- 2020
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17. MC1R variants and associations with pigmentation characteristics and genetic ancestry in a Hispanic, predominately Puerto Rican, population
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Smit, Amelia K., Collazo-Roman, Marielys, Vadaparampil, Susan T., Valavanis, Stella, Del Rio, Jocelyn, Soto, Brenda, Flores, Idhaliz, Dutil, Julie, and Kanetsky, Peter A.
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- 2020
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18. Acceptability and appropriateness of a risk-tailored organised melanoma screening program: Qualitative interviews with key informants.
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Dunlop, Kate L. A., Keogh, Louise A., Smith, Andrea L., Aranda, Sanchia, Aitken, Joanne, Watts, Caroline G., Smit, Amelia K., Janda, Monika, Mann, Graham J., Cust, Anne E., and Rankin, Nicole M.
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MEDICAL screening ,MEDICAL personnel ,MELANOMA ,EARLY detection of cancer ,HEALTH equity ,ECOLOGICAL risk assessment - Abstract
Introduction: In Australia, opportunistic screening (occurring as skin checks) for the early detection of melanoma is common, and overdiagnosis is a recognised concern. Risk-tailored cancer screening is an approach to cancer control that aims to provide personalised screening tailored to individual risk. This study aimed to explore the views of key informants in Australia on the acceptability and appropriateness of risk-tailored organised screening for melanoma, and to identify barriers, facilitators and strategies to inform potential future implementation. Acceptability and appropriateness are crucial, as successful implementation will require a change of practice for clinicians and consumers. Methods: This was a qualitative study using semi-structured interviews. Key informants were purposively selected to ensure expertise in melanoma early detection and screening, prioritising senior or executive perspectives. Consumers were expert representatives. Data were analysed deductively using the Tailored Implementation for Chronic Diseases (TICD) checklist. Results: Thirty-six participants were interviewed (10 policy makers; 9 consumers; 10 health professionals; 7 researchers). Key informants perceived risk-tailored screening for melanoma to be acceptable and appropriate in principle. Barriers to implementation included lack of trial data, reluctance for low-risk groups to not screen, variable skill level in general practice, differing views on who to conduct screening tests, confusing public health messaging, and competing health costs. Key facilitators included the perceived opportunity to improve health equity and the potential cost-effectiveness of a risk-tailored screening approach. A range of implementation strategies were identified including strengthening the evidence for cost-effectiveness, engaging stakeholders, developing pathways for people at low risk, evaluating different risk assessment criteria and screening delivery models and targeted public messaging. Conclusion: Key informants were supportive in principle of risk-tailored melanoma screening, highlighting important next steps. Considerations around risk assessment, policy and modelling the costs of current verses future approaches will help inform possible future implementation of risk-tailored population screening for melanoma. [ABSTRACT FROM AUTHOR]
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- 2023
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19. Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma
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Smit, Amelia K, Newson, Ainsley J, Best, Megan, Badcock, Caro-Anne, Butow, Phyllis N, Kirk, Judy, Dunlop, Kate, Fenton, Georgina, and Cust, Anne E
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- 2018
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20. Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population
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Fenton, Georgina L., Smit, Amelia K., Freeman, Lucinda, Badcock, Caro, Dunlop, Kate, Butow, Phyllis N., Kirk, Judy, and Cust, Anne E.
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- 2018
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21. Exploring the Potential Emotional and Behavioural Impact of Providing Personalised Genomic Risk Information to the Public : A Focus Group Study
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Smit, Amelia K., Keogh, Louise A., Newson, Ainsley J., Hersch, Jolyn, Butow, Phyllis, and Cust, Anne E.
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- 2015
22. Views of the Australian public on the delivery of risk-stratified cancer screening in the population: a qualitative study.
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Dunlop, Kate L. A., Rankin, Nicole M., Smit, Amelia K., Newson, Ainsley J., Keogh, Louise A., and Cust, Anne E.
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CANCER treatment ,PUBLIC health ,DISEASE risk factors ,WELL-being ,QUALITY of life - Abstract
Objective and importance of study: Risk-stratified approaches to cancer screening aim to provide tailored risk advice to individuals, rather than the mostly one-size-fits-all approach designed for the average person that is currently used in Australia. Stratified cancer screening has the potential to increase the benefits and reduce the harms of screening. Initial risk assessment is a crucial first step for screening programs that use risk stratification. We report findings from a qualitative study exploring the views of the Australian public on how to best deliver risk-stratified cancer screening in the population to help inform future implementation. Study type: Qualitative interview study. Methods: We conducted semistructured interviews with participants from a previous study, half of whom had received personal genomic risk information and half of whom had not. We asked how and where they would like to see risk-stratified screening delivered and how they felt about different health professionals assessing their cancer risk. Data were analysed thematically. Results: Forty interviews were conducted. The age range of participants was 21-68 years; 58% were female. Themes included: 1) Convenience is a priority; 2) General practice is a good fit for some; 3) Web-based technology is part of the process; and 4) "I would want to know why [I was being stratified]". Similar views were expressed by both groups. Our findings suggest that although health professionals were identified as having an important role, there were mixed preferences for delivery by general practitioners, medical specialists or nurses. Participants were less concerned about who undertook the risk assessment than whether the health professional had the appropriate skill set and availability. Clear communication and evidence of the need for change in screening eligibility and frequency were key factors in the successful delivery of risk-stratified screening. Conclusion: We identified that convenience and good communication, including clear explanations to the public with convincing evidence for change, will enable the successful delivery of risk-stratified cancer screening in the population, including organised and opportunistic screening approaches. Health professional education and upskilling across disciplines will be key facilitators. Engagement and further consultation with primary care and other key stakeholders will be central. [ABSTRACT FROM AUTHOR]
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- 2023
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23. Validation of self-reported sun exposure against electronic ultraviolet radiation dosimeters.
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Zhang, Ran, Smit, Amelia K, Espinoza, David, Allen, Martin, Reyes-Marcelino, Gillian, Kimlin, Michael G, Lo, Serigne N, Sharman, Ashleigh R, Law, Matthew H, Kanetsky, Peter A, Mann, Graham J, and Cust, Anne E
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SUNSHINE , *DOSIMETERS , *BLAND-Altman plot , *ULTRAVIOLET radiation , *ULTRAVIOLET radiation measurement , *SOLAR ultraviolet radiation - Abstract
From the dosimeter data we derived: (i) time spent outdoors exposed to UV, defined as any 8-s measurements with UV values of >0; and (ii) total standard erythemal doses (SEDs) as a measure of UV dose. Table 1 Spearman rank correlations between weekend and weekday ultraviolet radiation (UV) exposure measured as standard erythemal doses (SEDs) using electronic UV dosimeters HT
. Validation, exposure measurement, ultraviolet radiation, dosimetry, questionnaire, skin cancer Keywords: Validation; exposure measurement; ultraviolet radiation; dosimetry; questionnaire; skin cancer EN Validation exposure measurement ultraviolet radiation dosimetry questionnaire skin cancer 324 328 5 02/16/23 20230201 NES 230201 Ultraviolet radiation (UV) exposure is the main risk factor for skin cancer[1] and skin cancer prevention research and health promotion programme evaluation relies on the accurate measurement of sun exposure using questionnaires. [Extracted from the article] - Published
- 2023
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24. Effect of an interactive educational activity using handheld ultraviolet radiation dosimeters on sun protection knowledge among Australian primary school students
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Lee Solano, Marco, Robinson, Samuel, Allen, Martin W., Reyes-Marcelino, Gillian, Espinoza, David, Beswick, Brooke, Tse, Dorothy H.K., Ding, Liyang, Humphreys, Lauren, Van Kemenade, Cathelijne, Dobbinson, Suzanne, Smit, Amelia K., and Cust, Anne E.
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- 2022
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25. Communicating Personal Melanoma Polygenic Risk Information: Participants' Experiences of Genetic Counseling in a Community-Based Study.
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Smit, Amelia K., Espinoza, David, Fenton, Georgina L., Kirk, Judy, Innes, Jessica S., McGovern, Michael, Limb, Sharne, Turbitt, Erin, and Cust, Anne E.
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MONOGENIC & polygenic inheritance (Genetics) , *GENETIC counseling , *HEALTH literacy , *MELANOMA , *TELEPHONE calls - Abstract
Personalized polygenic risk information may be used to guide risk-based melanoma prevention and early detection at a population scale, but research on communicating this information is limited. This mixed-methods study aimed to assess the acceptability of a genetic counselor (GC) phone call in communicating polygenic risk information in the Melanoma Genomics Managing Your Risk randomized controlled trial. Participants (n = 509) received personalized melanoma polygenic risk information, an educational booklet on melanoma prevention, and a GC phone call, which was audio-recorded. Participants completed the Genetic Counseling Satisfaction Survey 1-month after receiving their risk information (n = 346). A subgroup took part in a qualitative interview post-study completion (n = 20). Survey data were analyzed descriptively using SPSS, and thematic analysis of the qualitative data was conducted using NVivo 12.0 software. The survey showed a high level of acceptability for the GC phone call (mean satisfaction score overall: 4.3 out of 5, standard deviation (SD): 0.6) with differences according to gender (mean score for women: 4.4, SD: 0.6 vs. men: 4.2, SD: 0.7; p = 0.005), health literacy (lower literacy: 4.1, SD: 0.8; average: 4.3, SD: 0.6; higher: 4.4, SD: 0.6: p = 0.02) and polygenic risk group (low risk: 4.5, SD: 0.5, SD: average: 4.3, SD: 0.7, high: 4.3, SD: 0.7; p = 0.03). During the GC phone calls, the discussion predominately related to the impact of past sun exposure on personal melanoma risk. Together our findings point to the importance of further exploring educational and support needs and preferences for communicating personalized melanoma risk among population subgroups, including diverse literacy levels. [ABSTRACT FROM AUTHOR]
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- 2022
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26. Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis.
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Mercado, Gabriela, Newson, Ainsley J., Espinoza, David, Cust, Anne E., and Smit, Amelia K.
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RISK assessment ,MOTIVATION (Psychology) ,PARTICIPATION ,MELANOMA ,RANDOMIZED controlled trials - Abstract
The evolution of polygenic scores for use in for disease prevention and control compels the development of guidelines to optimize their effectiveness and promote equitable use. Understanding the motivations and barriers to participation in genomics research can assist in drafting these standards. We investigated these in a community-based randomized controlled trial that examined the health behavioral impact of receiving personalized melanoma genomic risk information. We examined participant responses in a baseline questionnaire and conducted interviews post-trial participation. Motivations differed in two ways: (1) by gender, with those identifying as women placing greater importance on learning about their personal risk or familial risk, and how to reduce risk; and (2) by age in relation to learning about personal risk, and fear of developing melanoma. A barrier to participation was distrust in the handling of genomic data. Our findings provide new insights into the motivations for participating in genomics research and highlight the need to better target population subgroups including younger men, which will aid in tailoring recruitment for future genomic studies. [ABSTRACT FROM AUTHOR]
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- 2022
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27. Barriers and Facilitators for Population Genetic Screening in Healthy Populations: A Systematic Review.
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Shen, Emily C., Srinivasan, Swetha, Passero, Lauren E., Allen, Caitlin G., Dixon, Madison, Foss, Kimberly, Halliburton, Brianna, Milko, Laura V., Smit, Amelia K., Carlson, Rebecca, and Roberts, Megan C.
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GENETIC testing ,MEDICAL personnel ,ECOLOGICAL models ,GENETIC disorders - Abstract
Studies suggest that 1-3% of the general population in the United States unknowingly carry a genetic risk factor for a common hereditary disease. Population genetic screening is the process of offering otherwise healthy patients in the general population testing for genomic variants that predispose them to diseases that are clinically actionable, meaning that they can be prevented or mitigated if they are detected early. Population genetic screening may significantly reduce morbidity and mortality from these diseases by informing risk-specific prevention or treatment strategies and facilitating appropriate participation in early detection. To better understand current barriers, facilitators, perceptions, and outcomes related to the implementation of population genetic screening, we conducted a systematic review and searched PubMed, Embase, and Scopus for articles published from date of database inception to May 2020. We included articles that 1) detailed the perspectives of participants in population genetic screening programs and 2) described the barriers, facilitators, perceptions, and outcomes related to population genetic screening programs among patients, healthcare providers, and the public. We excluded articles that 1) focused on direct-to-consumer or risk-based genetic testing and 2) were published before January 2000. Thirty articles met these criteria. Barriers and facilitators to population genetic screening were organized by the Social Ecological Model and further categorized by themes. We found that research in population genetic screening has focused on stakeholder attitudes with all included studies designed to elucidate individuals' perceptions. Additionally, inadequate knowledge and perceived limited clinical utility presented a barrier for healthcare provider uptake. There were very few studies that conducted long-term follow-up and evaluation of population genetic screening. Our findings suggest that these and other factors, such as prescreen counseling and education, may play a role in the adoption and implementation of population genetic screening. Future studies to investigate macro-level determinants, strategies to increase provider buy-in and knowledge, delivery models for prescreen counseling, and long-term outcomes of population genetic screening are needed for the effective design and implementation of such programs. [ABSTRACT FROM AUTHOR]
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- 2022
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28. Using a Participatory Approach to Develop Research Priorities for Future Leaders in Cancer-Related Precision Public Health.
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Roberts, Megan C., Mader, June Mullaney, Turbitt, Erin, Smit, Amelia K., Landry, Latrice, Olstad, Dana Lee, Passero, Lauren E., and Allen, Caitlin G.
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PUBLIC health ,CAPACITY building ,PUBLIC health research ,POPULATION health - Abstract
Precision public health is an emerging discipline combining principles and frameworks of precision health with the goal of improving population health. The development of research priorities drawing on the strengths of precision and public health is critical to facilitate the growth of the discipline to improve health outcomes. We held an interactive workshop during a virtual conference bringing together early-career researchers across public health disciplines to identify research priorities in precision public health. The workshop participants discussed and voted to identify three priority areas for future research and capacity building including 1) enhancing equity and access to precision public health research and resources, 2) improving tools and metrics for evaluation and 3) applying principles of implementation science to support sustainable practices. Participants also developed future objectives for achieving each priority. Future efforts by working groups will continue the process of identifying, revising, and advancing critical research priorities to grow the impact of precision public health. [ABSTRACT FROM AUTHOR]
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- 2022
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29. Independent evaluation of melanoma polygenic risk scores in UK and Australian prospective cohorts*.
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Steinberg, Julia, Iles, Mark M., Lee, Jin Yee, Wang, Xiaochuan, Law, Matthew H., Smit, Amelia K., Nguyen‐Dumont, Tu, Giles, Graham G., Southey, Melissa C., Milne, Roger L., Mann, Graham J., Bishop, D. Timothy, MacInnis, Robert J., and Cust, Anne E.
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DISEASE risk factors ,MONOGENIC & polygenic inheritance (Genetics) ,MELANOMA ,SINGLE nucleotide polymorphisms ,AGE groups ,CONFIDENCE intervals - Abstract
Summary: Background: Previous studies suggest that polygenic risk scores (PRSs) may improve melanoma risk stratification. However, there has been limited independent validation of PRS‐based risk prediction, particularly assessment of calibration (comparing predicted to observed risks). Objectives: To evaluate PRS‐based melanoma risk prediction in prospective UK and Australian cohorts with European ancestry. Methods: We analysed invasive melanoma incidence in the UK Biobank (UKB; n = 395 647, 1651 cases) and a case‐cohort nested within the Melbourne Collaborative Cohort Study (MCCS, Australia; n = 4765, 303 cases). Three PRSs were evaluated: 68 single‐nucleotide polymorphisms (SNPs) at 54 loci from a 2020 meta‐analysis (PRS68), 50 SNPs significant in the 2020 meta‐analysis excluding UKB (PRS50) and 45 SNPs at 21 loci known in 2018 (PRS45). Ten‐year melanoma risks were calculated from population‐level cancer registry data by age group and sex, with and without PRS adjustment. Results: Predicted absolute melanoma risks based on age and sex alone underestimated melanoma incidence in the UKB [ratio of expected/observed cases: E/O = 0·65, 95% confidence interval (CI) 0·62–0·68] and MCCS (E/O = 0·63, 95% CI 0·56–0·72). For UKB, calibration was improved by PRS adjustment, with PRS50‐adjusted risks E/O = 0·91, 95% CI 0·87–0·95. The discriminative ability for PRS68‐ and PRS50‐adjusted absolute risks was higher than for risks based on age and sex alone (Δ area under the curve 0·07–0·10, P < 0·0001), and higher than for PRS45‐adjusted risks (Δ area under the curve 0·02–0·04, P < 0·001). Conclusions: A PRS derived from a larger, more diverse meta‐analysis improves risk prediction compared with an earlier PRS, and might help tailor melanoma prevention and early detection strategies to different risk levels. Recalibration of absolute risks may be necessary for application to specific populations. [ABSTRACT FROM AUTHOR]
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- 2022
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30. Knowledge, views and expectations for cancer polygenic risk testing in clinical practice: A cross‐sectional survey of health professionals.
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Smit, Amelia K., Sharman, Ashleigh R., Espinoza, David, Wallingford, Courtney, Young, Mary‐Anne, Dunlop, Kate, Tiller, Jane, Newson, Ainsley J., Meiser, Bettina, Cust, Anne E., and Yanes, Tatiane
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MEDICAL personnel , *DISEASE risk factors , *HEALTH surveys , *GENERAL practitioners , *QUESTIONNAIRES - Abstract
Polygenic risk scores (PRS) are becoming increasingly available in clinical practice to evaluate cancer risk. However, little is known about health professionals' knowledge, attitudes, and expectations of PRS. An online questionnaire was distributed by relevant health professional organisations predominately in Australia, Canada and the US to evaluate health professionals' knowledge, views and expectations of PRS. Eligible participants were health professionals who provide cancer risk assessments. Results from the questionnaire were analysed descriptively and content analysis was undertaken of free‐text responses. In total, 105 health professionals completed the questionnaire (genetic counsellors 84%; oncologists 6%; clinical geneticists 4%; other 7%). Although responses differed between countries, most participants (61%) had discussed PRS with patients, 20% had ordered a test and 14% had returned test results to a patient. Confidence and knowledge around interpreting PRS were low. Although 69% reported that polygenic testing will certainly or likely influence patient care in the future, most felt unprepared for this. If scaled up to the population, 49% expect that general practitioners would have a primary role in the provision of PRS, supported by genetic health professionals. These findings will inform the development of resources to support health professionals offering polygenic testing, currently and in the future. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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31. Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public.
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Dunlop, Kate, Rankin, Nicole M., Smit, Amelia K., Salgado, Zofia, Newson, Ainsley J., Keogh, Louise, and Cust, Anne E.
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PUBLIC health surveillance ,INTERVIEWING ,QUALITATIVE research ,TUMORS - Abstract
Background: There is mounting evidence of the benefit of risk‐stratified (risk‐tailored) cancer population screening, when compared to standard approaches. However, shifting towards this approach involves changes to practice that may give rise to implementation challenges. Objectives: To explore the public's potential acceptance of risk‐stratified screening across different cancer types, including reducing screening frequency if at low risk and the use of personal risk information, to inform implementation strategies. Method: Semi‐structured interviews were conducted with 40 public participants; half had received personal genomic risk information and half had not. Participants were prompted to consider different cancers. Data were analysed thematically as one dataset. Results: Themes included the following: (a) a sense of security; (b) tailored screening is common sense; (c) risk and the need to take action; (d) not every cancer is the same; and (e) trust and belief in health messages. Both groups expressed similar views. Participants were broadly supportive of risk‐stratified screening across different cancer types, with strong support for increased screening frequency for high‐risk groups. They were less supportive of reduced screening frequency or no screening for low‐risk groups. Findings suggest the public will be amenable to reducing screening when the test is invasive and uncomfortable; be less opposed to forgo screening if offered the opportunity to screen at some stage; and view visible cancers such as melanoma differently. Conclusions: Approaching distinct cancer types differently, tailoring messages for different audiences and understanding reasons for participating in screening may assist with designing future implementation strategies for risk‐stratified cancer screening. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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32. The Melanoma Genomics Managing Your Risk Study randomised controlled trial: statistical analysis plan.
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Lo, Serigne N., Smit, Amelia K., Espinoza, David, Cust, Anne E., on behalf of the Managing Your Risk Study Group, Newson, Ainsley J., Morton, Rachael L., Kimlin, Michael, Keogh, Louise, Law, Matthew H., Kirk, Judy, Dobbinson, Suzanne J., Kanetsky, Peter A., Mann, Graham J., Dawkins, Hugh, Savard, Jacqueline, Dunlop, Kate, Trevena, Lyndal, Jenkins, Mark, and Allen, Martin
- Subjects
- *
ULTRAVIOLET radiation , *STATISTICS , *CLINICAL trial registries , *GENOMICS , *MELANOMA , *PHARMACOGENOMICS , *BRAF genes , *ENVIRONMENTAL exposure prevention , *CLINICAL trials , *GENETIC testing , *SKIN tumors , *RISK assessment , *DISEASE susceptibility , *HEALTH behavior , *COST effectiveness , *RESEARCH funding , *DATA analysis - Abstract
Background: The Melanoma Genomics Managing Your Risk Study is a randomised controlled trial that aims to evaluate the efficacy of providing information on personal genomic risk of melanoma in reducing ultraviolet radiation (UV) exposure, stratified by traditional risk group (low or high phenotypic risk) in the general population. The primary outcome is objectively measured total daily Standard Erythemal Doses at 12 months. Secondary outcomes include UV exposure at specific time periods, self-reported sun protection and skin-examination behaviours, psychosocial outcomes, and ethical considerations surrounding offering genomic testing at a population level. A within-trial and modelled economic evaluation will be undertaken from an Australian health system perspective to assess the cost-effectiveness of the intervention.Objective: To publish the pre-determined statistical analysis plan (SAP) before database lock and the start of analysis.Methods: This SAP describes the data synthesis, analysis principles and statistical procedures for analysing the outcomes from this trial. The SAP was approved after closure of recruitment and before completion of patient follow-up. It outlines the planned primary analyses and a range of subgroup and sensitivity analyses. Health economic outcomes are not included in this plan but will be analysed separately. The SAP will be adhered to for the final data analysis of this trial to avoid potential analysis bias that may arise from knowledge of the outcome data.Results: This SAP is consistent with best practice and should enable transparent reporting.Conclusion: This SAP has been developed for the Melanoma Genomics Managing Your Risk Study and will be followed to ensure high-quality standards of internal validity and to minimise analysis bias.Trial Registration: Prospectively registered with the Australian New Zealand Clinical Trials Registry, ID: ACTR N12617000691347 . Registered on 15 May 2017. [ABSTRACT FROM AUTHOR]- Published
- 2020
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33. Who should access germline genome sequencing? A mixed methods study of patient views.
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Best, Megan C., Butow, Phyllis, Jacobs, Chris, Savard, Jacqueline, Biesecker, Barbara, Ballinger, Mandy L., Bartley, Nicci, Davies, Grace, Napier, Christine E., Smit, Amelia K., Thomas, David M., and Newson, Ainsley J.
- Subjects
NUCLEOTIDE sequencing ,SCIENTIFIC ability ,FAMILY history (Medicine) ,MEDICAL care surveys - Abstract
Implementation of any new medical test, including germline genome sequencing (GS) to inform cancer risk, should take place only when a test is effective, ethically justifiable and acceptable to a population. Little empirical evidence exists on patient views regarding GS for cancer risk. The aim of this study was to elicit opinions on who should be offered GS and who should pay for it. Participants with a probable genetic basis for their cancer (n = 335) and blood relatives (n = 199) were recruited to undergo GS and invited to complete questionnaires at baseline. A subset (n = 40) also participated in qualitative interviews about their views regarding access to GS to detect cancer risk. Our response rate was 92% for questionnaires and 100% for interviews. Participants expressed high enthusiasm overall for access to GS for those with a family history of cancer and anyone who requested testing, but enthusiasm was lower for universal access, if opting out was possible and finances not an issue. Rationales for these views reflected maximising the sound use of resources. Challenges to introducing community screening via GS to limit cancer burden were raised, including the current limits of science and individual ability to cope with uncertain results. Participants undergoing GS supported cancer risk testing for those with a family history of cancer but were concerned about the challenges of designing and implementing a population‐based GS cancer‐screening program. [ABSTRACT FROM AUTHOR]
- Published
- 2020
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34. Patient demographic characteristics and risk factors associated with sun protection behaviours in specialist melanoma clinics.
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Smith, Juliet, Espinoza, David, Smit, Amelia K., Gallo, Bruna, Smith, Andrea L., Lo, Serigne N., Guitera, Pascale, Martin, Linda K., and Cust, Anne E.
- Abstract
Objective Methods Results Conclusions We investigated the association between sun protection behaviours and demographic and melanoma risk characteristics of patients attending Australian melanoma specialist clinics. This may assist in targeting and tailoring melanoma prevention patient education for people at high‐risk and specific population subgroups.A cross‐sectional analysis of questionnaire data collected from participants attending the dermatology clinics at two major melanoma centres in Sydney, Australia between February 2021 and September 2023. The primary outcome was Sun Protection Habits (SPH) index (a summary score measured as habitual past month use of sunscreen, hats, sunglasses, a shirt with sleeves that covers the shoulders, limiting midday sun exposure and seeking shade, using a Likert scale). The primary analysis considered the SPH index and its component items scored as continuous.Data from 883 people were analysed. Factors associated with less frequent sun protection behaviours overall included male gender, no personal history of melanoma, lower perceived risk, lower calculated 10‐year risk of developing melanoma, and no private health insurance. People aged >61 years reported lower use of sunscreen but higher use of hats and sleeved‐shirts compared with people in the younger age group. There was no difference in overall sun protection behaviours according to family history of melanoma, country of birth or by lifetime melanoma risk among people without a personal history of melanoma.These findings highlight the potential for targeting high‐risk individuals with less frequent use of sun protection for patient education, public health messaging and ultimately improving sun protection behaviours. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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35. Patients' Views About Skin Self-examination After Treatment for Localized Melanoma.
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Dieng, Mbathio, Smit, Amelia K., Hersch, Jolyn, Morton, Rachael L., Cust, Anne E., Irwig, Les, Low, Donald, Low, Cynthia, and Bell, Katy J. L.
- Published
- 2019
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36. GP attitudes to and expectations for providing personal genomic risk information to the public: a qualitative study.
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Smit, Amelia K., Newson, Ainsley J., Keogh, Louise, Best, Megan, Dunlop, Kate, Vuong, Kylie, Kirk, Judy, Butow, Phyllis, Trevena, Lyndal, and Cust, Anne E.
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MEDICAL informatics ,CANCER risk factors ,RANDOMIZED controlled trials ,MEDICAL communication ,CLINICAL trials - Abstract
Background: As part of a pilot randomised controlled trial examining the impact of personal melanoma genomic risk information on behavioural and psychosocial outcomes, GPs were sent a booklet containing their patient's genomic risk of melanoma. Aim: Using this booklet as an example of genomic risk information that might be offered on a population-level in the future, this study explored GP attitudes towards communicating genomic risk information and resources needed to support this process. Design & setting: Semi-structured interviews were conducted with 22 Australian GPs. Method: The interviews were recorded and transcribed, and data were analysed thematically. Results: GPs in this sample believed that communicating genomic risk may become a responsibility within primary care and they recommended a shared decisionmaking approach to guide the testing process. Factors were identified that may influence how and when GPs communicate genomic risk information. GPs view genomics-based risk as one of many disease risk factors and feel that this type of information could be applied in practice in the context of overall risk assessment for diseases for which prevention and early detection strategies are available. They believe it is important to ensure that patients understand their genomic risk and do not experience long-term adverse psychological responses. GPs desire clinical practice guidelines that specify recommendations for genomic risk assessment and patient management, point-of-care resources, and risk prediction tools that include genomic and traditional risk factors. Conclusion: These findings will inform the development of resources for preparing GPs to manage and implement genomic risk information in practice. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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37. The melanoma genomics managing your risk study: A protocol for a randomized controlled trial evaluating the impact of personal genomic risk information on skin cancer prevention behaviors.
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Smit, Amelia K., Newson, Ainsley J., Morton, Rachael L., Kimlin, Michael, Keogh, Louise, Law, Matthew H., Kirk, Judy, Dobbinson, Suzanne, Kanetsky, Peter A., Fenton, Georgina, Allen, Martin, Butow, Phyllis, Dunlop, Kate, Trevena, Lyndal, Lo, Serigne, Savard, Jacqueline, Dawkins, Hugh, Wordsworth, Sarah, Jenkins, Mark, and Mann, Graham J.
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- *
MELANOMA , *RANDOMIZED controlled trials , *CANCER prevention , *MELANOMA diagnosis , *PHYSIOLOGICAL effects of ultraviolet radiation , *GENETICS - Abstract
Background Reducing ultraviolet radiation (UV) exposure and improving early detection may reduce melanoma incidence, mortality and health system costs. This study aims to evaluate the efficacy and cost-effectiveness of providing information on personal genomic risk of melanoma in reducing UV exposure at 12 months, according to low and high traditional risk. Methods In this randomized controlled trial, participants (target sample = 892) will be recruited from the general population, and randomized (1:1 ratio, intervention versus control). Intervention arm participants provide a saliva sample, receive personalized melanoma genomic risk information, a genetic counselor phone call, and an educational booklet on melanoma prevention. Control arm participants receive only the educational booklet. Eligible participants are aged 18–69 years, have European ancestry and no personal history of melanoma. All participants will complete a questionnaire and wear a UV dosimeter to objectively measure their sun exposure at baseline, 1- and 12-month time-points, except 1-month UV dosimetry will be limited to ~250 participants. The primary outcome is total daily Standard Erythemal Doses at 12 months. Secondary outcomes include objectively measured UV exposure for specific time periods (e.g. midday hours), self-reported sun protection and skin-examination behaviors, psycho-social outcomes, and ethical considerations surrounding offering genomic testing at a population level. A within-trial and modelled economic evaluation will be undertaken from an Australian health system perspective to assess the intervention costs and outcomes. Discussion This trial will inform the clinical and personal utility of introducing genomic testing into the health system for melanoma prevention and early detection at a population-level. Trial registration. Australian New Zealand Clinical Trials Registry ACTRN12617000691347. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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38. Validation of Questionnaire and Diary Measures of Time Outdoors Against an Objective Measure of Personal Ultraviolet Radiation Exposure.
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Cust, Anne E., Fenton, Georgina L., Smit, Amelia K., Espinoza, David, Dobbinson, Suzanne, Brodie, Alison, Dang, Huong Tran Cam, and Kimlin, Michael G.
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PHYSIOLOGICAL effects of ultraviolet radiation ,EXPOSURE dose ,RADIATION dosimetry ,POLYMER films ,PHYSIOLOGICAL effects of solar radiation - Abstract
Abstract: Self‐reported sun exposure is commonly measured using questionnaires or diaries, but there are limited data on their validity, particularly for population subgroups. This research aimed to compare self‐reported sun exposure, measured as (1) habitual time outdoors over the past month on weekends and weekdays and (2) a 4‐day diary measure, against objective measurement of personal ultraviolet radiation using polysulfone film dosimeters. From November 2015 to January 2016, 94 people (22–69 years and living in New South Wales, Australia) completed a questionnaire, 4‐day diary and 4‐day dosimeter measures of overall, weekday and weekend sun exposure. Spearman correlations and Bland–Altman plots were used to measure agreement. The overall weekly correlation was 0.57 (95% confidence interval [CI] 0.44, 0.68) between standard erythemal doses (SEDs) measured by dosimeter and time spent outdoors measured by questionnaire, 0.74 (95% CI 0.66–0.81) between dosimeter and diary, and 0.59 (95% CI 0.48–0.68) between questionnaire and diary measures. Validity was lower for younger people and weekend sun exposure. There was strong correlation between dosimeter and sun diary measures and moderate correlation between dosimeter and questionnaire measures. Daily measurement over a longer period may be required to accurately capture weeklong sun exposure in all population subgroups. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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39. A Pilot Randomized Controlled Trial of the Feasibility, Acceptability, and Impact of Giving Information on Personalized Genomic Risk of Melanoma to the Public.
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Smit, Amelia K., Espinoza, David, Newson, Ainsley J., Morton, Rachael L., Fenton, Georgina, Freeman, Lucinda, Dunlop, Kate, Butow, Phyllis N., Law, Matthew H., Kimlin, Michael G., Keogh, Louise A., Dobbinson, Suzanne J., Kirk, Judy, Kanetsky, Peter A., Mann, Graham J., and Cust, Anne E.
- Abstract
Background: Communication of personalized melanoma genomic risk information may improve melanoma prevention behaviors. Methods: We evaluated the feasibility and acceptability of communicating personalized genomic risk of melanoma to the public and its preliminary impact on behaviors and psychosocial outcomes. One hundred eighteen people aged 22 to 69 years provided a saliva sample and were randomized to the control (nonpersonalized educational materials) or intervention (personalized booklet presenting melanoma genomic risk as absolute and relative risks and a risk category based on variants in 21 genes, telephone-based genetic counseling, and nonpersonalized educational materials). Intention-to-treat analyses overall and by-risk category were conducted using ANCOVA adjusted for baseline values. Results: Consent to participate was 41%, 99% were successfully genotyped, and 92% completed 3-month follow-up. Intervention participants reported high satisfaction with the personalized booklet (mean = 8.6, SD = 1.6; on a 0-10 scale) and genetic counseling (mean = 8.1, SD = 2.2). No significant behavioral effects at 3-month follow-up were identified between intervention and control groups overall: objectively measured standard erythemal doses per day [-16%; 95% confidence interval (CI), -43% to 24%] and sun protection index (0.05; 95% CI, -0.07 to 0.18). There was increased confidence identifying melanoma at 3 months (0.40; 95% CI, 0.10-0.69). Stratified by risk category, effect sizes for intentional tanning and some individual sun protection items appeared stronger for the average-risk group. There were no appreciable group differences in skin cancer-related worry or psychologic distress. Conclusions: Our results demonstrate feasibility and acceptability of providing personalized genomic risk of melanoma to the public. Impact: Genomic risk information has potential as a melanoma prevention strategy. [ABSTRACT FROM AUTHOR]
- Published
- 2017
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40. Public preferences for communicating personal genomic risk information: a focus group study.
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Smit, Amelia K., Keogh, Louise A., Hersch, Jolyn, Newson, Ainsley J., Butow, Phyllis, Williams, Gabrielle, and Cust, Anne E.
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- *
COMMUNICATION , *ETHNIC groups , *EYE , *FOCUS groups , *HAIR , *PUBLIC health , *RESEARCH funding , *GENOMICS , *ACCESS to information , *CONTROL groups , *HUMAN research subjects , *PATIENT selection , *INDIVIDUALIZED medicine - Abstract
Background: Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies. Objective: To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals. Design: Focus groups, transcribed and analysed thematically. Participants: Thirty‐four participants from the public. Methods: Participants were provided with, and invited to discuss, a hypothetical scenario giving an individual's personalized genomic risk of melanoma displayed in several graphical formats. Results: Participants preferred risk formats that were familiar and easy to understand, such as a ‘double pie chart’ and ‘100 person diagram’ (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web‐based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or ‘informed’ general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face‐to‐face or telephone delivery was preferred for delivery of high‐risk results. Conclusions: These public preferences for communication strategies for genomic risk information will help to guide translation of genome‐based knowledge into improved population health. [ABSTRACT FROM AUTHOR]
- Published
- 2016
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41. 1036Independent evaluation of melanoma polygenic risk scores in UK and Australian prospective cohorts.
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Steinberg, Julia, Lee, Jin Yee, Wang, Harry, Law, Matthew, Smit, Amelia, Nguyen-Dumont, Tu, Giles, Graham, Southey, Melissa, Milne, Roger, Mann, Graham, MacInnis, Robert, and Cust, Anne
- Subjects
MELANOMA ,GENETIC variation ,AGE groups ,META-analysis ,CONFIDENCE intervals - Abstract
Background To improve melanoma early detection, tools to predict personal risk based on genetic information (polygenic risk scores, PRS) have been developed, but require external validation. Methods We analysed invasive melanoma incidence in UK Biobank (UKB; n = 395,647; 1,651 cases) and the Melbourne Collaborative Cohort Study (MCCS, Australia; n = 4,765; 303 cases). Three PRS were evaluated: 68 genetic variants (SNPs) at 54 loci from a 2020 meta-analysis (PRS68); 50 SNPs significant in the 2020 meta-analysis excluding UKB (PRS50); 45 SNPs at 21 loci known pre-2020 (PRS45). 10-year melanoma risks were calculated from population-level cancer registry data by age group and sex, with and without PRS adjustment. Results All PRS were strongly associated with melanoma incidence, including after adjustment for age, sex, ethnicity, and ease of tanning. Predicted absolute melanoma risks based on age and sex alone underestimated melanoma incidence in UKB (ratio expected/observed cases E/O=0.65, 95% confidence interval 0.62-0.68) and MCCS (E/O=0.65, 0.57-0.73). For UKB, this was reduced by PRS-adjustment, e.g. PRS50-adjusted risks E/O=0.91 (0.87-0.95). Discriminative ability for PRS68- and PRS50-adjusted absolute risks was higher than for risks based on age and sex alone (deltaAUC 0.07-0.1, p < 0.0001), and higher than for PRS45-adjusted risks (deltaAUC 0.02-0.04, p < 0.001). Conclusions A PRS derived from a larger, more diverse meta-analysis improves melanoma risk prediction compared to an earlier PRS. Re-calibration of absolute risks may be necessary for application to specific populations. Key messages A genetic score can improve prediction of melanoma risk and might help tailor melanoma prevention and early detection strategies to different risk levels. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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42. Unpacking factors contributing to melanoma overdiagnosis: does polygenic risk play a role?
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Smit AK and Cust AE
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- Humans, Mass Screening, Risk Factors, Melanoma diagnosis, Melanoma genetics, Skin Neoplasms diagnosis, Skin Neoplasms genetics
- Abstract
Competing Interests: Conflicts of interest the authors declare no conflicts of interest.
- Published
- 2023
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43. Long-term cost-effectiveness of a melanoma prevention program using genomic risk information compared with standard prevention advice in Australia.
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Law CK, Cust AE, Smit AK, Trevena L, Fernandez-Penas P, Nieweg OE, Menzies AM, Wordsworth S, and Morton RL
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- Adult, Humans, Australia, Cost-Benefit Analysis, Cost-Effectiveness Analysis, Genomics, Risk Factors, Quality-Adjusted Life Years, Melanoma genetics, Melanoma prevention & control, Sunburn
- Abstract
Purpose: Evidence indicates that a melanoma prevention program using personalized genomic risk provision and genetic counseling can affect prevention behaviors, including reducing sunburns in adults with no melanoma history. This analysis evaluated its longer-term cost-effectiveness from an Australian health system perspective., Methods: The primary outcome was incremental cost effectiveness ratio (ICER) of genomic risk provision (intervention) compared with standard prevention advice. A decision-analytic Markov model was developed using randomized trial data to simulate lifetime cost-effectiveness. All costs were presented in 2018/19 Australian dollars (AUD). The intervention effect on reduced sunburns was stratified by sex and traditional risk, which was calculated through a validated prediction model. Deterministic and probabilistic sensitivity analyses were undertaken for robustness checks., Results: The per participant cost of intervention was AUD$189. Genomic risk provision targeting high-traditional risk individuals produced an ICER of AUD$35,254 (per quality-adjusted life year gained); sensitivity analyses indicated the intervention would be cost-effective in more than 50% of scenarios. When the intervention was extended to low-traditional risk groups, the ICER was AUD$43,746 with a 45% probability of being cost-effective., Conclusion: Genomic risk provision targeted to high-traditional melanoma risk individuals is likely a cost-effective strategy for reducing sunburns and will likely prevent future melanomas and keratinocyte carcinomas., Competing Interests: Conflict of Interest Alexander M. Menzies has served on advisory boards for BMS, MSD, Novartis, Roche, Pierre-Fabre, and QBiotics., (Copyright © 2023 American College of Medical Genetics and Genomics. Published by Elsevier Inc. All rights reserved.)
- Published
- 2023
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44. Assessing the Potential for Patient-led Surveillance After Treatment of Localized Melanoma (MEL-SELF): A Pilot Randomized Clinical Trial.
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Ackermann DM, Dieng M, Medcalf E, Jenkins MC, van Kemenade CH, Janda M, Turner RM, Cust AE, Morton RL, Irwig L, Guitera P, Soyer HP, Mar V, Hersch JK, Low D, Low C, Saw RPM, Scolyer RA, Drabarek D, Espinoza D, Azzi A, Lilleyman AM, Smit AK, Murchie P, Thompson JF, and Bell KJL
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- Humans, Male, Middle Aged, Neoplasm Recurrence, Local, Pilot Projects, Self-Examination, Melanoma diagnosis, Melanoma surgery, Skin Neoplasms diagnosis, Skin Neoplasms pathology, Skin Neoplasms surgery
- Abstract
Importance: Patient-led surveillance is a promising new model of follow-up care following excision of localized melanoma., Objective: To determine whether patient-led surveillance in patients with prior localized primary cutaneous melanoma is as safe, feasible, and acceptable as clinician-led surveillance., Design, Setting, and Participants: This was a pilot for a randomized clinical trial at 2 specialist-led clinics in metropolitan Sydney, Australia, and a primary care skin cancer clinic managed by general practitioners in metropolitan Newcastle, Australia. The participants were 100 patients who had been treated for localized melanoma, owned a smartphone, had a partner to assist with skin self-examination (SSE), and had been routinely attending scheduled follow-up visits. The study was conducted from November 1, 2018, to January 17, 2020, with analysis performed from September 1, 2020, to November 15, 2020., Intervention: Participants were randomized (1:1) to 6 months of patient-led surveillance (the intervention comprised usual care plus reminders to perform SSE, patient-performed dermoscopy, teledermatologist assessment, and fast-tracked unscheduled clinic visits) or clinician-led surveillance (the control was usual care)., Main Outcomes and Measures: The primary outcome was the proportion of eligible and contacted patients who were randomized. Secondary outcomes included patient-reported outcomes (eg, SSE knowledge, attitudes, and practices, psychological outcomes, other health care use) and clinical outcomes (eg, clinic visits, skin surgeries, subsequent new primary or recurrent melanoma)., Results: Of 326 patients who were eligible and contacted, 100 (31%) patients (mean [SD] age, 58.7 [12.0] years; 53 [53%] men) were randomized to patient-led (n = 49) or clinician-led (n = 51) surveillance. Data were available on patient-reported outcomes for 66 participants and on clinical outcomes for 100 participants. Compared with clinician-led surveillance, patient-led surveillance was associated with increased SSE frequency (odds ratio [OR], 3.5; 95% CI, 0.9 to 14.0) and thoroughness (OR, 2.2; 95% CI, 0.8 to 5.7), had no detectable adverse effect on psychological outcomes (fear of cancer recurrence subscale score; mean difference, -1.3; 95% CI, -3.1 to 0.5), and increased clinic visits (risk ratio [RR], 1.5; 95% CI, 1.1 to 2.1), skin lesion excisions (RR, 1.1; 95% CI, 0.6 to 2.0), and subsequent melanoma diagnoses and subsequent melanoma diagnoses (risk difference, 10%; 95% CI, -2% to 23%). New primary melanomas and 1 local recurrence were diagnosed in 8 (16%) of the participants in the intervention group, including 5 (10%) ahead of routinely scheduled visits; and in 3 (6%) of the participants in the control group, with none (0%) ahead of routinely scheduled visits (risk difference, 10%; 95% CI, 2% to 19%)., Conclusions and Relevance: This pilot of a randomized clinical trial found that patient-led surveillance after treatment of localized melanoma appears to be safe, feasible, and acceptable. Experiences from this pilot study have prompted improvements to the trial processes for the larger trial of the same intervention., Trial Registration: http://anzctr.org.au Identifier: ACTRN12616001716459.
- Published
- 2022
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45. Effect of an interactive educational activity using handheld ultraviolet radiation dosimeters on sun protection knowledge among Australian primary school students.
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Lee Solano M, Robinson S, Allen MW, Reyes-Marcelino G, Espinoza D, Beswick B, Tse DHK, Ding L, Humphreys L, Van Kemenade C, Dobbinson S, Smit AK, and Cust AE
- Abstract
Ultraviolet radiation (UV) is the main cause of skin cancer, and children are a priority group for reducing UV exposure. We evaluated whether an interactive educational activity using handheld dosimeters improved UV-related knowledge among primary (elementary) school students. We conducted an uncontrolled before-after study among 427 students in grades 3-6 (ages 8-12 years) at five schools in the Greater Sydney region, Australia. Students used UV dosimeters to measure UV exposure, using the UV index scale, at different locations on their school grounds with and without different forms of sun protection, followed by an indoor classroom presentation and discussion. A 10-point anonymous questionnaire was completed by each student before and after the entire session (60-90 min). Before-after responses were compared using a generalised linear mixed model, adjusted for school, grade and gender. Overall, the mean raw scores increased from 6.3 (out of 10) before the intervention to 8.9 after the intervention, and the adjusted difference in scores was 2.6 points (95% confidence interval 2.4-2.8; p < 0.0001). Knowledge improved for all questions, with the greatest improvement for questions related to the UV Index (p < 0.05). The effect of the intervention was similar across different school, grade and gender groups. School and grade had no significant effect on mean survey scores, but girls scored an average 0.2 points higher than boys (95% confidence interval 0.1-0.4; p = 0.01). In conclusion, Australian primary school students had moderate knowledge about UV and sun protection, and knowledge improved significantly after a short interactive educational activity using handheld UV dosimeters., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2021 The Author(s).)
- Published
- 2021
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46. 'There is a lot of good in knowing, but there is also a lot of downs': public views on ethical considerations in population genomic screening.
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Smit AK, Reyes-Marcelino G, Keogh L, Cust AE, and Newson AJ
- Abstract
Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public (n=30) who had received information on their personal genomic risk of melanoma as part of a research project. The focus of the analysis presented here is participants' views regarding ethical considerations relevant to population genomic screening more generally. Data were analysed thematically and four key themes related to ethical considerations were identified: (i) personal responsibility for health: 'forewarned is forearmed'; (ii) perceptions of, and responses to, genetic fatalism; (iii) implications for parenting and reproduction; (iv) divided views on choosing to receive genomic risk information. Ethical considerations underlying these themes include the valorisation of information and choice, paternalism, non-directiveness and increasing responsibilisation of individuals in health and healthcare. These findings arguably indicate a thin public conceptualisation of population genomic testing, which draws heavily on how these themes tend to be described in existing social discourses. Findings suggest that further public engagement is required to increase complexity of debate, to consider (for example) the appropriate place of individual and social interests in population genomic testing. Further discernment of relevant ethical approaches, drawing on ethical frameworks from both public health and clinical settings, will also assist in determining the appropriate implementation of population genomic screening for complex conditions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2020
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47. Cancer screening in Australia: future directions in melanoma, Lynch syndrome, and liver, lung and prostate cancers.
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Weber MF, Marshall HM, Rankin N, Duffy S, Fong KM, Dunlop K, Humphries L, Smit AK, Cust AE, Taylor N, Mitchell G, Kang YJ, Tucker K, Jenkins M, Macrae F, Lockart I, Danta M, Armstrong BK, and Howe M
- Subjects
- Adult, Aged, Aged, 80 and over, Australia, Early Detection of Cancer trends, Forecasting, Humans, Male, Mass Screening trends, Middle Aged, Colorectal Neoplasms, Hereditary Nonpolyposis diagnosis, Early Detection of Cancer statistics & numerical data, Liver Neoplasms diagnosis, Lung Neoplasms diagnosis, Mass Screening statistics & numerical data, Melanoma diagnosis, Prostatic Neoplasms diagnosis
- Abstract
While Australia now has well-established national screening programs for breast, bowel and cervical cancers, research continues into the feasibility of developing systematic screening programs for a number of other cancers. In this paper, experts in their fields provide perspectives on the current state of play and future directions for screening and surveillance for melanoma, Lynch syndrome, and liver, lung and prostate cancers in Australia. Although the evidence does not support population screening, there may be opportunities to prevent thousands of deaths through systematic approaches to the early detection of lung cancer and melanoma, testing for Lynch syndrome, and organised surveillance for hepatocellular carcinoma among individuals at high risk - guided by targeted research. The paper also looks at what impact new prostate specific antigen testing guidelines are having on screening for prostate cancer., Competing Interests: FM has done paid consultancy work for Rhythm Biosciences and received payment for providing medicolegal opinions. BA’s then-employer, the Sax Institute, was reimbursed by the Prostate Cancer Foundation of Australia (PCFA) for remunerated time spent advising the systematic evidence review team for the PSA testing guideline and on writing parts of the guideline document. BA is a member of the PCFA’s Board and Chair of their Research Advisory Committee. He receives no remuneration for either of these positions, but all expenses for attending meetings are paid for by the PCFA.
- Published
- 2019
- Full Text
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