22 results on '"Smit, Amelia K."'
Search Results
2. Acceptability and appropriateness of a risk-tailored organised melanoma screening program: Qualitative interviews with key informants.
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Dunlop KLA, Keogh LA, Smith AL, Aranda S, Aitken J, Watts CG, Smit AK, Janda M, Mann GJ, Cust AE, and Rankin NM
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- Humans, Health Care Costs, Health Personnel, Emotions, Mass Screening, Qualitative Research, Melanoma diagnosis, Melanoma prevention & control
- 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., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Dunlop et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
- Published
- 2023
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3. 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
- Subjects
- 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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4. Independent evaluation of melanoma polygenic risk scores in UK and Australian prospective cohorts.
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Steinberg J, Iles MM, Lee JY, Wang X, Law MH, Smit AK, Nguyen-Dumont T, Giles GG, Southey MC, Milne RL, Mann GJ, Bishop DT, MacInnis RJ, and Cust AE
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- Australia epidemiology, Genetic Predisposition to Disease, Genome-Wide Association Study, Humans, Polymorphism, Single Nucleotide, Prospective Studies, Risk Assessment, Risk Factors, United Kingdom epidemiology, Melanoma epidemiology, Melanoma genetics, Multifactorial Inheritance
- Abstract
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., (© 2022 The Authors. British Journal of Dermatology published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists.)
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- 2022
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5. 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.
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- 2022
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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 AK, Allen M, Beswick B, Butow P, Dawkins H, Dobbinson SJ, Dunlop KL, Espinoza D, Fenton G, Kanetsky PA, Keogh L, Kimlin MG, Kirk J, Law MH, Lo S, Low C, Mann GJ, Reyes-Marcelino G, Morton RL, Newson AJ, Savard J, Trevena L, Wordsworth S, and Cust AE
- Subjects
- Adolescent, Adult, Aged, Australia, Female, Genomics, Humans, Middle Aged, National Health Programs, Young Adult, Melanoma diagnosis, Melanoma genetics, Melanoma prevention & control, Skin Neoplasms genetics, Skin Neoplasms prevention & control
- Abstract
Purpose: We evaluated the impact of personal melanoma genomic risk information on sun-related behaviors and psychological outcomes., Methods: In this parallel group, open, randomized controlled trial, 1,025 Australians of European ancestry without melanoma and aged 18-69 years were recruited via the Medicare database (3% consent). Participants were randomized to the intervention (n = 513; saliva sample for genetic testing, personalized melanoma risk booklet based on a 40-variant polygenic risk score, telephone-based genetic counseling, educational booklet) or control (n = 512; educational booklet). Wrist-worn ultraviolet (UV) radiation dosimeters (10-day wear) and questionnaires were administered at baseline, 1 month postintervention, and 12 months postbaseline., Results: At 12 months, 948 (92%) participants completed dosimetry and 973 (95%) the questionnaire. For the primary outcome, there was no effect of the genomic risk intervention on objectively measured UV exposure at 12 months, irrespective of traditional risk factors. For secondary outcomes at 12 months, the intervention reduced sunburns (risk ratio: 0.72, 95% confidence interval: 0.54-0.96), and increased skin examinations among women. Melanoma-related worry was reduced. There was no overall impact on general psychological distress., Conclusion: Personalized genomic risk information did not influence sun exposure patterns but did improve some skin cancer prevention and early detection behaviors, suggesting it may be useful for precision prevention. There was no evidence of psychological harm., (© 2021. The Author(s).)
- Published
- 2021
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7. 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 DM, Smit AK, Janda M, van Kemenade CH, Dieng M, Morton RL, Turner RM, Cust AE, Irwig L, Hersch JK, Guitera P, Soyer HP, Mar V, Saw RPM, Low D, Low C, Drabarek D, Espinoza D, Emery J, Murchie P, Thompson JF, Scolyer RA, Azzi A, Lilleyman A, and Bell KJL
- Subjects
- Australia, Follow-Up Studies, Humans, Randomized Controlled Trials as Topic, Self-Examination, Melanoma diagnosis, Skin Neoplasms diagnosis
- Abstract
Background: Most subsequent new primary or recurrent melanomas might be self-detected if patients are trained to systematically self-examine their skin and have access to timely medical review (patient-led surveillance). Routinely scheduled clinic visits (clinician-led surveillance) is resource-intensive and has not been shown to improve health outcomes; fewer visits may be possible if patient-led surveillance is shown to be safe and effective. The MEL-SELF trial is a randomised controlled trial comparing patient-led surveillance with clinician-led surveillance in people who have been previously treated for localised melanoma., Methods: Stage 0/I/II melanoma patients (n = 600) from dermatology, surgical, or general practice clinics in NSW Australia, will be randomised (1:1) to the intervention (patient-led surveillance, n = 300) or control (usual care, n = 300). Patients in the intervention will undergo a second randomisation 1:1 to polarised (n = 150) or non-polarised (n = 150) dermatoscope. Patient-led surveillance comprises an educational booklet, skin self-examination (SSE) instructional videos; 3-monthly email/SMS reminders to perform SSE; patient-performed dermoscopy with teledermatologist feedback; clinical review of positive teledermoscopy through fast-tracked unscheduled clinic visits; and routinely scheduled clinic visits following each clinician's usual practice. Clinician-led surveillance comprises an educational booklet and routinely scheduled clinic visits following each clinician's usual practice. The primary outcome, measured at 12 months, is the proportion of participants diagnosed with a subsequent new primary or recurrent melanoma at an unscheduled clinic visit. Secondary outcomes include time from randomisation to diagnosis (of a subsequent new primary or recurrent melanoma and of a new keratinocyte cancer), clinicopathological characteristics of subsequent new primary or recurrent melanomas (including AJCC stage), psychological outcomes, and healthcare use. A nested qualitative study will include interviews with patients and clinicians, and a costing study we will compare costs from a societal perspective. We will compare the technical performance of two different models of dermatoscope (polarised vs non-polarised)., Discussion: The findings from this study may inform guidance on evidence-based follow-up care, that maximises early detection of subsequent new primary or recurrent melanoma and patient wellbeing, while minimising costs to patients, health systems, and society., Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864 . Registered on 18 February 2021.
- Published
- 2021
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8. The Melanoma Genomics Managing Your Risk Study randomised controlled trial: statistical analysis plan.
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Lo SN, Smit AK, Espinoza D, and Cust AE
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- Australia, Cost-Benefit Analysis, Environmental Exposure prevention & control, Health Behavior, Humans, Melanoma economics, Melanoma genetics, Melanoma psychology, Randomized Controlled Trials as Topic, Risk Assessment, Skin Neoplasms economics, Skin Neoplasms genetics, Skin Neoplasms psychology, Ultraviolet Rays adverse effects, Data Interpretation, Statistical, Genetic Predisposition to Disease, Genetic Testing economics, Genomics economics, Melanoma prevention & control, Skin Neoplasms prevention & control
- 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.
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- 2020
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9. Implementation considerations for offering personal genomic risk information to the public: a qualitative study.
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Smit AK, Reyes-Marcelino G, Keogh L, Dunlop K, Newson AJ, and Cust AE
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- Adult, Aged, Attitude, Clinical Trials as Topic, Communication, Early Detection of Cancer methods, Emotions, Female, Genomics, Humans, Male, Melanoma genetics, Middle Aged, Pilot Projects, Qualitative Research, Risk Assessment, Young Adult, Early Detection of Cancer psychology, Genetic Testing, Melanoma prevention & control, Patient Acceptance of Health Care psychology, Research Subjects psychology
- Abstract
Background: Genomic risk information, based on common genomic susceptibility variants associated with risk of complex diseases such as cancer, may be incorporated into personalised prevention and screening strategies. We aimed to engage with members of the public, who are important stakeholders in this process, to further inform program development and other implementation outcomes such as acceptability and appropriateness., Methods: Semi-structured interviews were undertaken with 30 participants (aged 24-69 years, 50% female) recruited from a pilot trial in which they received personalised genomic risk information for melanoma. We explored participants' views and attitudes towards offering general personal genomic risk information to the broader population. The data were analysed thematically., Results: Two overarching themes relevant to implementation considerations were identified. Firstly, participants' preferences for accepting an offer of genomic risk information were based on family history, disease incidence and the possibility of prevention. Secondly, participants felt that the processes for offering risk information should be based on individual preferences, triaged according to risk and be supported by a health professional trained in genomics., Conclusions: Participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable, particularly for common, complex conditions such as cancer. Understanding participants' preferences for receiving genomic risk information will assist with communication strategies and health workforce planning. We anticipate that these findings will contribute to the development of implementation strategies for incorporating genomic risk information into routine clinical practice.
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- 2020
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10. Risk attitudes and sun protection behaviour: Can behaviour be altered by using a melanoma genomic risk intervention?
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Morton RL, Asher R, Peyton E, Tran A, Smit AK, Butow PN, Kimlin MG, Dobbinson SJ, Wordsworth S, Keogh L, and Cust AE
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- Female, Health Knowledge, Attitudes, Practice, Humans, Male, Middle Aged, Risk-Taking, Genomics methods, Health Behavior physiology, Melanoma prevention & control, Skin Neoplasms prevention & control, Sunbathing psychology, Sunlight adverse effects
- Abstract
Background: Exposure to ultraviolet radiation from sunlight is directly associated with melanoma skin cancer, however reducing sun-exposure can be difficult to achieve at a population level., Methods: Using a genomic risk information behaviour change trial for melanoma prevention, we classified participants as risk-seeking, risk-neutral or risk-averse for domain-specific risk taking (DOSPERT). One-way ANOVA determined the association between socio-demographic characteristics and risk-taking score, and multivariable linear regression ascertained impact of an individual's underlying risk propensity on an objective measure of sun-exposure, standard erythemal dose (SED), at 3-months follow-up., Results: Of 119 participants, mean age 53 years; 50% males, 87% had a personal/family history of cancer; 19% were classified risk-seeking, 57% risk-neutral. The mean risk-taking score was significantly higher in younger participants (≤50 years: 13.86 vs. >50 years: 11.11, p = 0.003); and lower in those with a personal/family history of skin cancer versus without (10.55 vs 13.33, p = 0.009). Risk averse individuals had lower weekly mean SEDs at 3-months than risk neutral and risk seeking individuals (2.56, 5.81, 4.81 respectively, p = 0.01). Risk seekers showed fewer sun protective habits (p < 0.001); and higher intentional tanning, (p = 0.01). At 3-months, risk seekers attained 16%-54% lower SEDs in the genomic information group compared with controls, however this was not significantly different across risk groups (interaction p = 0.13)., Conclusion: An individual's underlying risk attitude is likely associated with sun-exposure behaviours, and may modify the effect of a genomic risk information behaviour change intervention. Young people and risk seekers may benefit most from being given information on their genetic risk of melanoma., (Copyright © 2019 Elsevier Ltd. All rights reserved.)
- Published
- 2019
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11. 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
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- 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.
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- 2019
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12. Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma.
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Smit AK, Newson AJ, Best M, Badcock CA, Butow PN, Kirk J, Dunlop K, Fenton G, and Cust AE
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- Adolescent, Adult, Aged, Female, Genetic Counseling psychology, Humans, Male, Melanoma genetics, Middle Aged, New South Wales, Truth Disclosure, Uncertainty, Attitude, Genetic Predisposition to Disease psychology, Melanoma psychology
- Abstract
The aim of this research was to understand how genomics-based personal melanoma risk information impacts psychological and emotional health outcomes in the general population. In a pilot randomized controlled trial, participants (n = 103) completed the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire, 3 months after receiving personal melanoma genomic risk information. Mean scores for MICRA items and subscales were stratified by genomic risk group (low, average, high), gender, education, age, and family history of melanoma. P values were obtained from t-tests and analysis of variance tests. We found that overall, participants (mean age: 53 years, range: 21-69; 52% female) had a total MICRA mean score of 18.6 (standard deviation: 11.1, range: 1-70; possible range: 0-105). The high genomic risk group had higher mean scores for the total (24.2, F
2,100 = 6.7, P = 0.0019), distress (3.3, F2,100 = 9.4, P = 0.0002) and uncertainty (8.5, F2,100 = 6.5, P = 0.0021) subscales compared with average (17.6, 1.1, and 4.5, respectively) and low-risk groups (14.1, 0.5, and 2.5, respectively). Positive experiences scores were consistent across risk groups. In conclusion, MICRA scores for the total, distress and uncertainty subscales in our study were relatively low overall, but people who receive a high genomic risk result may benefit from increased support following testing.- Published
- 2018
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13. 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 AK, Newson AJ, Morton RL, Kimlin M, Keogh L, Law MH, Kirk J, Dobbinson S, Kanetsky PA, Fenton G, Allen M, Butow P, Dunlop K, Trevena L, Lo S, Savard J, Dawkins H, Wordsworth S, Jenkins M, Mann GJ, and Cust AE
- Subjects
- Adolescent, Adult, Aged, Australia, Clinical Protocols, Cost-Benefit Analysis, Environmental Exposure prevention & control, Female, Follow-Up Studies, Health Behavior, Humans, Male, Melanoma economics, Melanoma genetics, Melanoma psychology, Middle Aged, Prospective Studies, Risk Assessment, Skin Neoplasms economics, Skin Neoplasms genetics, Skin Neoplasms psychology, Ultraviolet Rays adverse effects, Young Adult, Genetic Predisposition to Disease, Genetic Testing economics, Genomics economics, Melanoma prevention & control, Skin Neoplasms prevention & control
- 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., (Copyright © 2018 Elsevier Inc. All rights reserved.)
- Published
- 2018
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14. 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 GL, Smit AK, Freeman L, Badcock C, Dunlop K, Butow PN, Kirk J, and Cust AE
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- Adult, Aged, Female, Humans, Male, Melanoma genetics, Middle Aged, New South Wales epidemiology, Program Evaluation, Risk Factors, Surveys and Questionnaires, Young Adult, Communication, Genome, Human, Melanoma epidemiology, Precision Medicine, Telephone
- Abstract
Communicating personalized genomic risk results for common diseases to the general population as a form of tailored prevention is novel and may require alternative genetic counseling service delivery models. We describe the development and evaluation of a communication protocol for disclosing melanoma genomic risk information to the asymptomatic general population and assess participants' satisfaction and acceptability. Participants (n = 117) were aged 22-69 years, living in New South Wales, Australia and unselected for family history. They provided a saliva sample and had genomic testing for melanoma for low to moderate penetrant melanoma susceptibility variants in 21 genes. Participants could choose to receive their results from a genetic counselor via telephone, followed by a mailed booklet or to receive their risk result via mailed booklet only with a follow-up call for those at high risk. A follow-up questionnaire was completed by 85% of participants 3-months later. Most participants (80%) elected to receive their result via telephone. Participants were highly satisfied with the delivery of results (mean 3.4 out of 4, standard deviation 0.5), and this did not differ by delivery mode, risk category, age or sex. On follow-up, 75% accurately recalled their risk category, 6% indicated a preference for a different delivery mode, either electronic or face-to-face. The process of disclosing genomic risk results to the general population over the telephone with accompanying written material was feasible and acceptable, and may be useful for communicating polygenic risk for common diseases in the context of increasing demands for genomic testing.
- Published
- 2018
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15. 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 AK, Espinoza D, Newson AJ, Morton RL, Fenton G, Freeman L, Dunlop K, Butow PN, Law MH, Kimlin MG, Keogh LA, Dobbinson SJ, Kirk J, Kanetsky PA, Mann GJ, and Cust AE
- Subjects
- Adolescent, Adult, Aged, Feasibility Studies, Female, Follow-Up Studies, Humans, Male, Melanoma epidemiology, Melanoma genetics, Middle Aged, New South Wales epidemiology, Pilot Projects, Retrospective Studies, Risk Factors, Skin Neoplasms epidemiology, Skin Neoplasms genetics, Young Adult, Genetic Counseling methods, Genetic Predisposition to Disease, Genetic Testing methods, Informed Consent, Melanoma prevention & control, Patient Education as Topic, Skin Neoplasms prevention & control
- 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. Cancer Epidemiol Biomarkers Prev; 26(2); 212-21. ©2016 AACR., (©2016 American Association for Cancer Research.)
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- 2017
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16. Public preferences for communicating personal genomic risk information: a focus group study.
- Author
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Smit AK, Keogh LA, Hersch J, Newson AJ, Butow P, Williams G, and Cust AE
- Subjects
- Aged, Aged, 80 and over, Female, Focus Groups, Health Knowledge, Attitudes, Practice, Humans, Information Dissemination, Male, Middle Aged, New South Wales, Risk Assessment, Risk Factors, Communication, Genomics, Melanoma prevention & control, Patient Preference, Skin Neoplasms prevention & control
- 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., (© 2015 The Authors. Health Expectations. Published by John Wiley & Sons Ltd.)
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- 2016
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17. 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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18. Communicating Personal Melanoma Polygenic Risk Information: Participants' Experiences of Genetic Counseling in a Community-Based Study.
- Author
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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.
- Subjects
- *
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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19. Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis.
- Author
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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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20. Translating melanoma genomic risk information into prevention and early detection strategies: behavioural, psychosocial, ethical and implementation considerations
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Smit, Amelia K
- Subjects
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
21. Patient demographic characteristics and risk factors associated with sun protection behaviours in specialist melanoma clinics.
- Author
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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]
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- 2024
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22. Exploring the Potential Emotional and Behavioural Impact of Providing Personalised Genomic Risk Information to the Public: A Focus Group Study.
- Author
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Smit, amelia K., Keogh, Louise a., Newson, ainsley J., Hersch, Jolyn, Butow, Phyllis, and Cust, anne E.
- Subjects
- *
HEALTH risk communication , *MEDICAL genomics , *MELANOMA , *FOCUS groups , *BREAST cancer diagnosis , *DISCRIMINATION in insurance - Abstract
Aim: To explore the potential emotional and behavioural impact of providing information on personalised genomic risk to the public, using melanoma as an example, to aid research translation. Methods: We conducted four focus groups in which 34 participants were presented with a hypothetical scenario of an individual's lifetime genomic risk of melanoma (using the term 'genetic risk'). We asked about understanding of genetic risk, who would choose to receive this risk information, potential emotional and behavioural impacts, and other concerns or potential benefits. Data were analysed thematically. Results: Participants thought this risk information could potentially motivate preventive behaviours such as sun protection and related it to screening for other diseases including breast cancer. Factors identified as influencing the decision to receive genetic risk information included education level, children, age and gender. Participants identified potential negative impacts on the recipient such as anxiety and worry, and proposed that this could be mitigated by providing additional explanatory and prevention information, and contact details of a health professional for further discussion. Participants' concerns included workplace and insurance discrimination. Conclusion: Participants recognised the potential for both positive and negative emotional and behavioural impacts related to receiving information on the personalised genomic risk of melanoma. © 2015 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]
- Published
- 2015
- Full Text
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