Designing a decision aid for cancer prevention Milton, Shakira R; Macrae, Finlay; McIntosh, Jennifer ...
Journal of clinical oncology,
06/2022, Letnik:
40, Številka:
16_suppl
Journal Article
Recenzirano
Odprti dostop
10531
Background: Australian guidelines recommend those aged 50 to 70-years-old without contraindications, consider taking low-dose aspirin (100 mg – 300 mg per day) for at least 2.5 years to reduce ...their risk of colorectal cancer. To increase uptake of the new guidelines, we hypothesized that a decision aid (DA) would help facilitate a discussion between clinicians and patients about aspirin chemoprevention. We aimed to design a DA with clinician and consumer input including state-of-the-art expected frequency trees (EFTs). We aimed to explore clinicians’ opinions about using EFTs with their patients during consultations and gain consumers feedback on DAs including their understanding and their hypothetical decision to take aspirin or not. Methods: Semi-structured interviews were conducted with relevant clinicians including familial cancer clinic staff (geneticists, oncologists and genetic counsellors), gastroenterologists, pharmacists, and general practitioners (GPs). Focus groups were conducted with consumers in the target age range of the guidelines. DAs were developed through an iterative process. The clinician and focus group interview schedules covered ease of comprehension, design, potential effects on decision making, and approaches to implementation of the DA. Coding was inductive and the focus group interviews were independently coded by two researchers. Themes were developed through consensus between the authors. Final versions of the DAs were proposed to consumers for their final approval after all changes were made. Results: Sixty-four interviews were completed with clinicians between March and October 2019. Twelve consumers, aged 50 to 70 years, participated in two focus groups in February and March 2020. The clinicians agreed that the EFTs would be helpful to facilitate a discussion with patients but suggested including an additional estimate of the effects of aspirin on all-cause mortality. Clinicians agreed that patients would benefit from being shown the EFT in a consultation. The consumers felt favorable about the DA, especially if used with a clinician, and suggested some additional changes to the design and wording to improve ease of comprehension. Conclusions: We have designed a DA using novel approaches to communicate risks and benefits of low dose aspirin for cancer and cardiovascular disease prevention. The DAs are currently being trialled in the SITA trial in general practice to determine its impact on informed decision-making and aspirin uptake.
There is significant interest in the use of polygenic risk score (PRS) tests to improve cancer risk assessment and stratified prevention. Our current understanding of preferences regarding different ...aspects of this novel testing approach is limited. This study examined which attributes of a PRS test most influence the likelihood of testing.
A discrete choice experiment was developed to elicit preferences for different aspects of a PRS test by surveying an online sample of the Australian population. Preferences were assessed using mixed logistic regression, latent class analysis, and marginal willingness to pay.
The 1002 surveyed respondents were more likely to choose a PRS test that was more accurate, tested for multiple cancer types, and enabled cancer risk reduction through lifestyle modification, screening, or medication. There was also a preference for testing through a primary care physician rather than online or through a genetic specialist. A test that did not impact life insurance eligibility or premiums was preferred over the one that did.
This study found that the Australian population prefer a PRS test that is highly accurate, tests for multiple cancers, has noninvasive risk reduction measures, and is performed through primary care.
Australian guidelines recommend people aged 50-70 years old consider taking low-dose aspirin to reduce their risk of colorectal cancer. The aim was to design sex-specific decision aids (DAs) with ...clinician and consumer input, including expected frequency trees (EFTs) to communicate the risks and benefits of taking aspirin.
Semi-structured interviews were conducted with clinicians. Focus groups were conducted with consumers. The interview schedules covered ease of comprehension, design, potential effects on decision-making, and approaches to implementation of the DAs. Thematic analysis was employed; independent coding by 2 researchers was inductive. Themes were developed through consensus between authors.
Sixty-four clinicians were interviewed over 6 months in 2019. Twelve consumers aged 50-70 years participated in two focus groups in February and March 2020. The clinicians agreed that the EFTs would be helpful to facilitate a discussion with patients but suggested including an additional estimate of the effects of aspirin on all-cause mortality. The consumers felt favourable about the DAs and suggested changes to the design and wording to ease comprehension.
DAs were designed to communicate the risks and benefits of low-dose aspirin for disease prevention. The DAs are currently being trialled in general practice to determine their impact on informed decision-making and aspirin uptake.
•Genomic testing can predict risks of disease for all in the population.•We explored decision-making & attitudes about genomic testing in general practice.•Attitudes towards the genomic test were ...predominantly positive.•Many indifferent attitudes showed that the test did not pose significant concern.•This study will inform GPs’ future counselling for patients considering genomic testing.
A genomic test to predict personal risk of colorectal cancer (CRC) that targets screening and could be feasibly implemented in primary care. We explored informed decision-making and attitudes towards genomic testing in this setting.
A CRC genomic test was offered to 150 general practice patients with brief discussion of its implications. We measured informed choice about the test, consisting knowledge, attitudes and test uptake. Sixteen purposively-sampled participants were interviewed.
Of 150, 142 (95%) completed the informed choice measure and of 27 invited, 16 (59%) completed an interview. 73% made an informed choice about the test. Interviews revealed that participants with inadequate knowledge on the informed choice scale still understood the gist of the test. While positive attitudes were most prevalent, some had concerns, and many were indifferent to the test. Positive attitudes included: that risk information could facilitate risk reduction; negative attitudes included: that risk results could cause worry and be used for insurance discrimination; indifferent attitudes included: that the test seemed benign and it was easy to do.
Our study adds to the evidence that genomic tests for CRC risk do not pose significant concern to patients in community settings.
As genomic tests become more prevalent, this study’s findings can be used to facilitate informed decision-making and ensure equitable access.
Objectives
To assess the feasibility and uptake of a community‐based prostate cancer (PCa) screening programme selecting men according to their genetic risk of PCa. To assess the uptake of PCa ...screening investigations by men invited for screening. The uptake of the pilot study would guide the opening of the larger BARCODE1 study recruiting 5000 men.
Subjects and Methods
Healthy males aged 55–69 years were invited to participate via their general practitioners (GPs). Saliva samples were collected via mailed collection kits. After DNA extraction, genotyping was conducted using a study specific assay. Genetic risk was based on genotyping 130 germline PCa risk single nucleotide polymorphisms (SNPs). A polygenic risk score (PRS) was calculated for each participant using the sum of weighted alleles for 130 SNPs. Study participants with a PRS lying above the 90th centile value were invited for PCa screening by prostate magnetic resonance imaging (MRI) and biopsy.
Results
Invitation letters were sent to 1434 men. The overall study uptake was 26% (375/1436) and 87% of responders were eligible for study entry. DNA genotyping data were available for 297 men and 25 were invited for screening. After exclusions due to medical comorbidity/invitations declined, 18 of 25 men (72%) underwent MRI and biopsy of the prostate. There were seven diagnoses of PCa (38.9%). All cancers were low‐risk and were managed with active surveillance.
Conclusion
The BARCODE1 Pilot has shown this community study in the UK to be feasible, with an overall uptake of 26%. The main BARCODE1 study is now open and will recruit 5000 men. The results of BARCODE1 will be important in defining the role of genetic profiling in targeted PCa population screening.
Patient Summary
What is the paper about?
Very few prostate cancer screening programmes currently exist anywhere in the world. Our pilot study investigated if men in the UK would find it acceptable to have a genetic test based on a saliva sample to examine their risk of prostate cancer development. This test would guide whether men are offered prostate cancer screening tests.
What does it mean for patients?
We found that the study design was acceptable: 26% of men invited to take part agreed to have the test. The majority of men who were found to have an increased genetic risk of prostate cancer underwent further tests offered (prostate MRI scan and biopsy). We have now expanded the study to enrol 5000 men. The BARCODE1 study will be important in examining whether this approach could be used for large‐scale population prostate cancer screening.
In Australia, evidence-based guidelines recommend that women consider taking selective oestrogen receptor modulators (SERMs) to reduce their risk of breast cancer. In practice, this requires ...effective methods for communicating the harms and benefits of taking SERMs so women can make an informed choice.
To evaluate how different risk presentations influence women's decisions to consider taking SERMs.
Cross-sectional, correlational study of Australian women in general practice.
Three risk communication formats were developed that included graphics, numbers, and text to explain the reduction in breast cancer risk and risk of side effects for women taking SERMs (raloxifene or tamoxifen). Women aged 40-74 years in two general practices were shown the risk formats using vignettes of hypothetical women at moderate or high risk of breast cancer and asked to choose 'If this was you, would you consider taking a SERM?' Descriptive statistics and predictors (risk format, level of risk, and type of SERM) of choosing SERMs were determined by logistic regression.
A total of 288 women were recruited (an 88% response rate) between March and May 2017. The risk formats that showed a government statement and an icon array were associated with a greater likelihood of considering SERMs relative to one that showed a novel expected frequency tree. Risk formats for raloxifene and for the high-risk vignettes were also more strongly associated with choosing to consider SERMs. No associations were found with any patient demographics.
Specific risk formats may lead to more women considering taking SERMs to reduce breast cancer risk, especially if they are at high risk of the condition. Raloxifene may be a more acceptable SERM to patients.
Summary
Objective
Up to half of patients assessed for suspected new‐onset epileptic seizures report previous undiagnosed events. This suggests that delay to timely and expert assessment is a major ...issue. Very little is known about the degree of delay or nature of the undiagnosed events, impacting on our understanding of new‐onset epilepsy. In this study we aimed to examine events that occur before presentation, as well as the extent and risk factors for delay to assessment.
Method
Included in this retrospective study were 220 patients diagnosed at the First Seizure Clinic (Austin Health, Australia) between 2003 and 2006 with an epileptic index seizure. Patients with a prior diagnosis of epileptic seizures were excluded. Chart review was undertaken, including detailed interviews conducted by an epileptologist at first assessment. Logistic regression assessed risk factors for delay from first event to presentation, including event characteristics, socioeconomic disadvantage, employment, and distance to medical facility.
Results
Forty‐one percent (n = 90) of patients had one or more event before their index seizure. Of these, 50% had multiple or more than five prior events and 28% experienced one or more convulsive event before the index seizure. Of the total 220 patients, 36% had delayed presentation >4 weeks, 21% delayed >6 months, and 14% delayed >2 years. First events without convulsions or features likely to disrupt behaviour were strongly associated with delay (p = <0.001). Relative socioeconomic disadvantage was also associated with delay to presentation (p = 0.04).
Significance
Our findings suggest a gap in early diagnosis and care in a sizable proportion of new‐onset cases, despite a “first world” urban environment and the availability of free basic medical care. Delay appears particularly likely when events are nonconvulsive or low‐impact, suggesting that these seizure types may be underrepresented in studies of new‐onset epilepsy. This has implications for our understanding of the incidence, evolution, impact, and treatment response of new‐onset epilepsy.
Improving cancer diagnosis is a national priority in the UK. with the NHS Long Term Plan pledging to increase the percentage of cancers found at an early stage from 50% to 75% by 2028. Patients with ...cancer diagnosed at an early stage generally have better outcomes and longer survival. Most cancers in the UK are diagnosed following a symptomatic presentation to primary care, with over 80% of patients with cancer seeing their GP in the year before diagnosis. National screening programs are available for breast, colorectal, and cervical cancer, but identify only 5% of cases. A lung cancer screening programme has recently been approved in the UK. GPs select patients for referral based on presenting clinical features; individual or combinations of features representing a 3% or greater chance of cancer should trigger urgent investigation. For patients with features in the 1%-2% risk category, triage tests to further inform clinical judgement include general or cancer-specific blood tests, imaging, or faecal immunochemical tests, which identify haemoglobin in a faeces sample.
A risk-stratified approach to colorectal cancer (CRC) screening could result in a more acceptable balance of benefits and harms, and be more cost-effective.
To determine the effect of a consultation ...in general practice using a computerised risk assessment and decision support tool (Colorectal cancer RISk Prediction, CRISP) on risk-appropriate CRC screening.
Randomised controlled trial in 10 general practices in Melbourne, Australia, from May 2017 to May 2018.
Participants were recruited from a consecutive sample of patients aged 50-74 years attending their GP. Intervention consultations included CRC risk assessment using the CRISP tool and discussion of CRC screening recommendations. Control group consultations focused on lifestyle CRC risk factors. The primary outcome was risk-appropriate CRC screening at 12 months.
A total of 734 participants (65.1% of eligible patients) were randomised (369 intervention, 365 control); the primary outcome was determined for 722 (362 intervention, 360 control). There was a 6.5% absolute increase (95% confidence interval CI = -0.28 to 13.2) in risk-appropriate screening in the intervention compared with the control group (71.5% versus 65.0%; odds ratio OR 1.36, 95% CI = 0.99 to 1.86,
= 0.057). In those due CRC screening during follow-up, there was a 20.3% (95% CI = 10.3 to 30.4) increase (intervention 59.8% versus control 38.9%; OR 2.31, 95% CI = 1.51 to 3.53,
<0.001) principally by increasing faecal occult blood testing in those at average risk.
A risk assessment and decision support tool increases risk-appropriate CRC screening in those due screening. The CRISP intervention could commence in people in their fifth decade to ensure people start CRC screening at the optimal age with the most cost-effective test.
Abstract only
1520
Background: In the United Kingdom, current screening guidelines for TP53 germline mutation carriers solely recommends annual breast MRI, despite the wide spectrum of malignancies ...typically seen in this group. Some centres employ family specific screening with most centres having an “open-door” policy. Recent evidence suggests there may be a survival benefit with more intensive screening, including whole-body MRI. There are no published data on the psychological impact of such screening programmes. Methods: This study sought to investigate the role of one-off non-contrast whole-body MRI (WB MRI) in the screening of asymptomatic TP53 mutation carriers aged over 18 years. Clinical and psychological endpoints were assessed. Scans were read by radiologists blinded to participant carrier status. The incidence of malignancies diagnosed in TP53 mutation carriers against general population controls was calculated. The incidences of non-malignant relevant disease and irrelevant disease were measured, as well as the number of investigations required to determine relevance of findings. A series of questionnaires is used to assess the psychological impact of screening. Results: 44 TP53 mutation carriers and 44 population controls were recruited. In TP53 mutation carriers, six of 44 (13.6%, 95% CI: 5.2%-27.4%) participants were diagnosed with cancer during the study, all of which would be considered life threatening if untreated. Two were found to have two primary cancers. Two participants with cancer had abnormalities on the MRI which were initially thought to be benign (a pericardial cyst and a uterine fibroid) but transpired to be sarcomas. No controls were diagnosed with cancer. Fifteen carriers (34.1%, 95% CI: 20.5%-49.9%) and 7 controls (15.9%, 95% CI: 6.6%-30.1%) underwent further investigations following the WB MRI for abnormalities that transpired to be benign (p = 0.049). To date, there is no evidence of clinically significant adverse psychosocial effects. Conclusions: The cancer detection rate in this group justifies a minimum baseline non-contrast WB MRI in germline TP53 mutation carriers. Clinical trial information: NCT01737255.
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