39 results on '"Smit, Amelia"'
Search Results
2. 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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3. 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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4. 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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5. 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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6. Acceptability and appropriateness of a risk-tailored organised melanoma screening program: Qualitative interviews with key informants
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Dunlop, Kate L. A., primary, Keogh, Louise A., additional, Smith, Andrea L., additional, Aranda, Sanchia, additional, Aitken, Joanne, additional, Watts, Caroline G., additional, Smit, Amelia K., additional, Janda, Monika, additional, Mann, Graham J., additional, Cust, Anne E., additional, and Rankin, Nicole M., additional
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- 2023
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7. 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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8. 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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9. 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, Chi Kin, primary, Cust, Anne E., additional, Smit, Amelia K., additional, Trevena, Lyndal, additional, Fernandez-Penas, Pablo, additional, Nieweg, Omgo E., additional, Menzies, Alexander M., additional, Wordsworth, Sarah, additional, and Morton, Rachael L., additional
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- 2023
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10. Acceptability of risk-tailored cancer screening among Australian GPs: a qualitative study
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LA Dunlop, Kate, primary, Smit, Amelia K, additional, Keogh, Louise A, additional, Newson, Ainsley J, additional, Rankin, Nicole M, additional, and Cust, Anne E, additional
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- 2023
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11. 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, primary, Rankin, Nicole, additional, Smit, Amelia, additional, Newson, Ainsley, additional, Keogh, Louise, additional, and Cust, Anne, additional
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- 2023
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12. 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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13. 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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14. 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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15. Validation of self-reported sun exposure against electronic ultraviolet radiation dosimeters
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Zhang, Ran, primary, Smit, Amelia K, additional, Espinoza, David, additional, Allen, Martin, additional, Reyes-Marcelino, Gillian, additional, Kimlin, Michael G, additional, Lo, Serigne N, additional, Sharman, Ashleigh R, additional, Law, Matthew H, additional, Kanetsky, Peter A, additional, Mann, Graham J, additional, and Cust, Anne E, additional
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- 2022
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16. Barriers and Facilitators for Population Genetic Screening in Healthy Populations: A Systematic Review
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Shen, Emily C., primary, Srinivasan, Swetha, additional, Passero, Lauren E., additional, Allen, Caitlin G., additional, Dixon, Madison, additional, Foss, Kimberly, additional, Halliburton, Brianna, additional, Milko, Laura V., additional, Smit, Amelia K., additional, Carlson, Rebecca, additional, and Roberts, Megan C., additional
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- 2022
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17. Using a Participatory Approach to Develop Research Priorities for Future Leaders in Cancer-Related Precision Public Health
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Roberts, Megan C., primary, Mader, June Mullaney, additional, Turbitt, Erin, additional, Smit, Amelia K., additional, Landry, Latrice, additional, Olstad, Dana Lee, additional, Passero, Lauren E., additional, and Allen, Caitlin G., additional
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- 2022
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18. 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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19. 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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20. Effect of an interactive educational activity using handheld ultraviolet radiation dosimeters on sun protection knowledge among Australian primary school students
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Solano, Marco Lee, primary, Robinson, Samuel, additional, Allen, Martin W, additional, Reyes-Marcelino, Gillian, additional, Espinoza, David, additional, Beswick, Brooke, additional, Tse, Dorothy Hoi Ki, additional, Ding, Liyang, additional, Humphreys, Lauren, additional, Van Kemenade, Cathelijne, additional, Dobbinson, Suzanne, additional, Smit, Amelia K, additional, and Cust, Anne E, additional
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- 2021
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21. 1036Independent evaluation of melanoma polygenic risk scores in UK and Australian prospective cohorts
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Steinberg, Julia, primary, Lee, Jin Yee, additional, Wang, Harry, additional, Law, Matthew, additional, Smit, Amelia, additional, Nguyen-Dumont, Tu, additional, Giles, Graham, additional, Southey, Melissa, additional, Milne, Roger, additional, Mann, Graham, additional, MacInnis, Robert, additional, and Cust, Anne, additional
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- 2021
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22. 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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23. 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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24. 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., primary, Sharman, Ashleigh R., additional, Espinoza, David, additional, Wallingford, Courtney, additional, Young, Mary‐Anne, additional, Dunlop, Kate, additional, Tiller, Jane, additional, Newson, Ainsley J., additional, Meiser, Bettina, additional, Cust, Anne E., additional, and Yanes, Tatiane, additional
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- 2021
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25. Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public
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Dunlop, Kate, primary, Rankin, Nicole M., additional, Smit, Amelia K., additional, Salgado, Zofia, additional, Newson, Ainsley J., additional, Keogh, Louise, additional, and Cust, Anne E., additional
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- 2021
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26. Additional file 4 of 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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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, 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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Data_FILES - Abstract
Additional file 4.
- Published
- 2021
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27. Additional file 1 of 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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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, 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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Data_FILES - Abstract
Additional file 1.
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- 2021
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28. Additional file 3 of 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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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, 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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Data_FILES - Abstract
Additional file 3.
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- 2021
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29. Additional file 2 of 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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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, 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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Data_FILES - Abstract
Additional file 2.
- Published
- 2021
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30. Additional file 1 of 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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Additional file 1. Interview guide questions specific to implementation considerations. This table contains the subset of questions from the interview guide specific to implementation considerations.
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- 2020
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31. Translating melanoma genomic risk information into prevention and early detection strategies: behavioural, psychosocial, ethical and implementation considerations
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Smit, Amelia K
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Prevention ,Population ,Early detection ,Genomics ,Melanoma ,Risk communication - Abstract
Melanoma, the most life threatening form of skin cancer, is associated with significant morbidity and mortality. However, more than 80% of melanoma diagnoses could be prevented through reduced sun exposure and improved sun protection. Early detection through skin examination increases the likelihood of identifying melanoma at an early stage, when disease prognosis is better. But prevention and early detection behaviours are sub-optimal in Australia. Further improvements to strategies that encourage these behaviours are required. A novel approach is to personalise prevention and early detection strategies by taking into account a range of factors, including personal genomic (polygenic) risk, for individual risk assessment, and the provision of risk-specific (risk-stratified) recommendations. For melanoma, common genomic variants individually have small to moderate effect sizes for risk, and collectively have been shown to improve risk prediction models. Melanoma genomic risk variants also have a wide distribution, which would enable the stratification of risk in the wider population. There are several potential cross-cutting implications of personalising melanoma prevention and early detection strategies for the otherwise healthy population, which relate to individuals, families, ethical and implementation considerations. However, the evidence base for these implications is poor, and considerations of benefits and drawbacks are underdeveloped. This PhD thesis addresses major gaps in research by generating novel, mixed-methods (qualitative and quantitative) evidence on key implications of translating melanoma genomic risk information into personalised prevention and early detection. It includes evidence on individual impacts, communication with family, friends and health professionals, ethical and implementation considerations. These findings will inform future research and policy on personalised prevention and early detection efforts, such as risk-stratified screening.
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- 2020
32. GP attitudes to and expectations for providing personal genomic risk information to the public: a qualitative study
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Smit, Amelia K, primary, Newson, Ainsley J, additional, Keogh, Louise, additional, Best, Megan, additional, Dunlop, Kate, additional, Vuong, Kylie, additional, Kirk, Judy, additional, Butow, Phyllis, additional, Trevena, Lyndal, additional, and Cust, Anne E, additional
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- 2019
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33. Cancer screening in Australia: future directions in melanoma, Lynch syndrome, and liver, lung and prostate cancers
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Weber, Marianne F Weber, primary, Marshall, Henry, additional, Rankin, Nicole, additional, Duffy, Stephen, additional, Fong, Kwun, additional, Dunlop, Kate, additional, Humphreys, Lauren, additional, Smit, Amelia, additional, Cust, Anne, additional, Taylor, Natalie, additional, Mitchell, Gillian, additional, Kang, Yoon-Jung, additional, Tucker, Kathy, additional, Jenkins, Mark, additional, Macrae, Finlay, additional, Lockart, Ian, additional, Danta, Mark, additional, Armstrong, Bruce, additional, and Howe, Megan, additional
- Published
- 2019
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34. 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
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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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35. 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.
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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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36. 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., primary, Espinoza, David, additional, Newson, Ainsley J., additional, Morton, Rachael L., additional, Fenton, Georgina, additional, Freeman, Lucinda, additional, Dunlop, Kate, additional, Butow, Phyllis N., additional, Law, Matthew H., additional, Kimlin, Michael G., additional, Keogh, Louise A., additional, Dobbinson, Suzanne J., additional, Kirk, Judy, additional, Kanetsky, Peter A., additional, Mann, Graham J., additional, and Cust, Anne E., additional
- Published
- 2017
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37. Public preferences for communicating personal genomic risk information: a focus group study
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Smit, Amelia K., primary, Keogh, Louise A., additional, Hersch, Jolyn, additional, Newson, Ainsley J., additional, Butow, Phyllis, additional, Williams, Gabrielle, additional, and Cust, Anne E., additional
- Published
- 2015
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38. 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
- Full Text
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39. Effect of an interactive educational activity using handheld ultraviolet radiation dosimeters on sun protection knowledge among Australian primary school students.
- Author
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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
- Full Text
- View/download PDF
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