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Introduction: E-cigarette use remains a controversial topic, with questions over how people transition between e-cigarette use and cigarette smoking. This paper examined transitions into and out of nicotine product use in a representative sample of UK youth., Methods: We used Markov multistate transition probability models on data from 10 229 participants (10-25 years old) in the UK Household Longitudinal Study (2015-2021). We used four product use states ('never', 'non-current use', 'e-cigarette only' and 'smoking and dual use') and estimated likelihood of transitions according to sociodemographic characteristics., Results: Among participants who had never used nicotine products, most were still non-users a year later (92.9% probability; 95% CI 92.6%, 93.2%); a small proportion transitioned to using e-cigarettes only (4.0%; 95% CI 3.7%, 4.2%) and cigarettes (2.2%; 95% CI 2.0%, 2.4%). Those aged 14-17 years were the most likely to start using a nicotine product. E-cigarette use was less persistent overtime than cigarette smoking, with a 59.1% probability (95% CI 56.9%, 61.0%) of e-cigarette users still using after 1 year compared with 73.8% (95% CI 72.1%, 75.4%) for cigarette smoking. However, there was a 14% probability (95% CI 12.8%, 16.2%) that e-cigarette users went onto smoke cigarettes after 1 year, rising to 25% (95% CI 23%, 27%) after 3 years., Conclusion: This study found that although overall nicotine product use was relatively rare, participants were more likely to experiment with e-cigarette use than cigarette smoking. This was mostly not persistent over time; however, approximately one in seven transitioned to cigarette smoking. Regulators should aim to deter all nicotine product use among children., Competing Interests: Competing interests: AAL is a trustee of Action on Smoking and Health. CV reports consultancy work for Our Future Health unrelated to this work., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Background: Social media may influence children and young people's health behaviour, including cigarette and e-cigarette use., Methods: We analysed data from participants aged 10-25 years in the UK Household Longitudinal Study 2015-2021. The amount of social media use reported on a normal weekday was related to current cigarette smoking and e-cigarette use. Generalised estimating equation (GEE) logistic regression models investigated associations of social media use with cigarette smoking and e-cigarette use. Models controlled for possible confounders including age, sex, country of UK, ethnicity, household income and use of cigarette/e-cigarettes by others within the home., Results: Among 10 808 participants with 27 962 observations, current cigarette smoking was reported by 8.6% of participants for at least one time point, and current e-cigarette use by 2.5% of participants. In adjusted GEE models, more frequent use of social media was associated with greater odds of current cigarette smoking. This was particularly apparent at higher levels of use (eg, adjusted odds ratio (AOR) 3.60, 95% CI 2.61 to 4.96 for ≥7 hours/day vs none). Associations were similar for e-cigarettes (AOR 2.73, 95% CI 1.40 to 5.29 for ≥7 hours/day social media use vs none). There was evidence of dose-response in associations between time spent on social media and both cigarette and e-cigarette use (both p<0.001). Analyses stratified by sex and household income found similar associations for cigarettes; however, for e-cigarettes associations were concentrated among males and those from higher household income groups., Conclusions: Social media use is associated with increased risk of cigarette smoking and e-cigarette use. There is a need for greater research on this issue as well as potential policy responses., Competing Interests: Competing interests: NSH is Chair of Action on Smoking and Health and Medical Director of Asthma and Lung UK. AAL is a Trustee of Action on Smoking and Health., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Background: Local authorities in England have an important role in shaping healthy local environments contributing to childhood obesity. This study examined changes in diet and physical activity in primary school children following a three-year, complex, community-based intervention in Golborne ward, the second most deprived ward in London., Methods: The Go-Golborne intervention aimed to shape the local environment across multiple settings with the engagement of a large number of local government and community stakeholders in a joint approach. Activities focused on six co-created themes to make changes to local environments and reduce sugary snacks and beverage consumption, increase fruit and vegetable intake, promote healthy snacks, increase active play and travel, and reduce screen time. We analysed changes in self-reported diet and physical activity, collected annually between 2016 and 2019, from 1,650 children aged 6-11 years through six local schools, who all received the intervention. We used multilevel, linear and logistic random-slope regression models adjusted for time on study, baseline age, gender, ethnicity, deprivation quintile, school, and baseline weight status., Results: After three years of follow-up, there were reductions in sugar-sweetened beverage consumption (adjusted beta -0·43 occasions/day, 95% CI -0·55 to -0·32), fruit and vegetable consumption (adjusted beta -0.22 portions, 95% CI -0.44 to 0.001) and car travel to and from school (adjusted OR 0·19, 95% CI 0·06 to 0·66), while screen time increased (high versus moderate/low: OR 2·30, 95% CI 1·36 to 3·90). For other behavioural outcomes, there was no statistically significant evidence of changes., Conclusion: Local authorities have substantial powers to make positive changes to the obesogenic environment but programmes remain under-evaluated. Results from the ambitious Go-Golborne intervention demonstrated mixed results in health behaviours following programme implementation. These results underline the importance of a coordinated and comprehensive policy response to support changes in wider environmental and social conditions as well as appropriate and holistic evaluations of initiatives to inform local actions on obesogenic environments., (© 2024. The Author(s).)

Background: Social media use is high among children and young people and might influence health behaviours. We examined social media use and use of tobacco and e-cigarettes in the UK., Methods: We used data from participants aged 10-25 years from the UK Household Longitudinal Study (January 2015-January 2022). Participants were asked: "On a normal weekday, that is Monday to Friday, how many hours do you spend chatting or interacting with friends through a social website or app like that?". Specific social media platforms were not specified. Responses were none, less than 1 h, 1-3 h, 4-6 h, 7 h or more. Outcomes were current tobacco smoking and e-cigarette use. Generalised Estimating Equation (GEE) logistic regression models investigated associations of social media use with tobacco and e-cigarette use, and fixed effects analyses investigated changes in social media use with uptake of both products. Models included possible confounders such as age, sex, household income, ethnicity (White vs non-White) and use of tobacco or e-cigarettes by others within the home. All participants gave written informed consent., Findings: The analytic sample included 10 808 participants with 27 962 observations (mean age 15·7 years [SD 3·8], 5080 [47%] male, 5728 [53%] female, and 7868 [73%] White). Current tobacco smoking was reported at one or more timepoints by 929 (8·6%) participants, and current e-cigarette use by 270 (2·5%) participants. In adjusted GEE models, all levels of social media use were associated with greater odds of current smoking than no use. This association was particularly apparent at higher levels of use adjusted odds ratio [aOR] 3·11, 95% CI 2·41-4·03 for ≥7 h use vs no use), with similar associations for e-cigarettes (aOR 3·04, 2·11-4·40 for ≥7 h use vs no use). Fixed effects analyses also found increased use of social media to be associated with increased uptake of both products (eg, changing to using social media for ≥7 h/day was associated with >2 times the odds of taking up tobacco smoking [aOR 2·33, 1·28-4·24])., Interpretation: These analyses suggest an association between social media use and e-cigarette and tobacco use. Potential pathways include promotion of these products on social media. Further research with details on specific platforms would be useful as well as with longer follow-up time., Funding: Cancer Research UK., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

Background: Patterning of cigarette and e-cigarette use among young people remains poorly characterized. We aimed to describe these patterns in the UK Millennium Cohort Study at age 14 and 17 years., Methods: Data on cigarette and e-cigarette use come from 9731 adolescents. Latent class analysis assigned participants to membership of classes of product use and multinomial logistic regression analyses assessed differences in the likelihood of belonging to classes by sociodemographic (age, gender, ethnicity, household income, maternal education and country of residence) and smoking-related social factors (caregiver tobacco use, caregiver e-cigarette use and peer smoking)., Results: We identified four classes of use: 45.8% of adolescents 'continued to abstain' from cigarettes or e-cigarettes; 21.3% 'experimented' (used once or in the past but not currently) with cigarettes and/or e-cigarettes by age 17 but were not current users; 19.0% were 'late adopters', characterized by low levels of use at age 14 but high levels of experimentation and current use at age 17; and 13.9% were 'early adopters', characterized by high levels of experimentation and current use at ages 14 and 17. At age 17, 70.4% of 'early adopters' smoked cigarettes regularly plus an additional 27.3% experimented with cigarettes. Corresponding percentages for e-cigarettes were 37.9% and 58.9%. Tobacco and e-cigarette use by caregivers, and cigarette use by peers, were associated with being both 'late adopters' and 'early adopters'., Conclusions: Approximately one in seven adolescents in the UK are 'early adopters' of nicotine products. This highlights the need to develop and implement effective policies to prevent nicotine use uptake., (© The Author(s) 2023. Published by Oxford University Press on behalf of the European Public Health Association.)

Introduction: It is illegal in the UK to sell tobacco or nicotine e-cigarettes to people under the age of 18 years, as is displaying tobacco cigarettes at the point of sale. This paper examined changes in exposure to display of these products in shops and sources of these products among children and adolescent users over time METHODS: Data from representative repeated online cross-sectional surveys of youth in Great Britain (11-18 years) were used (2018-2022; n=12 445). Outcome measures included noticing product displays and sources of e-cigarettes and tobacco cigarettes. Logistic regressions examined the associations of these outcome variables over time and with sociodemographic variables., Results: Of 12 040 participants with complete data, 10.1% used some form of nicotine product (4.2% cigarettes, 2.9% e-cigarettes, 3.0% both) at least occasionally. The likelihood of noticing tobacco cigarettes on display fell over time for both supermarkets (2018: 67.1% to 2022: 58.5%) and small shops (2018: 81.3% to 2022: 66.3%), but the likelihood of noticing e-cigarettes in supermarkets rose (2018: 57.4% to 2022: 66.5%). Sources of tobacco cigarettes did not differ over time, but e-cigarette users were more likely to get their e-cigarettes from small shops in 2022 (51.2%) vs 2019 (34.2%) (OR 2.02, 95% CI 1.24, 3.29)., Conclusion: This study provides evidence that current policies to limit awareness of and access to both tobacco and e-cigarettes among adolescents in the UK may not be effective. UK policies on the advertising, promotion and sale of both tobacco and e-cigarettes need to be reinforced to deter use among children and adolescents., Competing Interests: Competing interests: NSH is chair of Action on Smoking and Health and medical director of Asthma and Lung UK. AAL is a trustee of Action on Smoking and Health. HC and LB are employees of Action on Smoking and Health., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Introduction: Most people who smoke initiate smoking in adolescence. Risk factors for smoking are changing over time as demographics shift, and technologies such as social media create new avenues for the tobacco industry to recruit smokers. We assessed risk factors associated with smoking uptake and regular smoking among a representative cohort of UK adolescents., Methods: Data come from 8944 children followed prospectively as part of the UK Millennium Cohort Study. Smoking uptake was assessed as adolescents who had never smoked tobacco at the age of 14 years, but reported smoking ≥1 cigarette per week by the age of 17 years (regular smoking). We used logistic regression to assess associations between smoking uptake and selected sociodemographic factors including household income, caregiver smoking, peer smoking, and social media use. Weighted percentages and Office for National Statistics Data were used to estimate numbers of regular smokers and new smokers in the UK., Results: Among the whole sample, 10.6% of adolescents were regular smokers at the age of 17 years. Of these, 52% initiated smoking between the ages of 14 and 17 years. Uptake was more common if caregivers smoked (13.6% vs 5.0%, p<0.001) or friends smoked (12.6% vs 4.3%, p<0.001), and among those reporting >5 hours/day of social media use (9.8% vs 4.1%, p=0.006). Applying these percentages to population data, an estimated 160000 adolescents in the UK were regular smokers by the age of 17 years, of whom more than 100000 initiated smoking between the ages of 14 and 17 years., Conclusions: This analysis of smoking uptake and regular smoking highlight that smoking behavior remains highly transmissible within families and peer groups, reinforcing inequalities. Social media are highlighted as a potential vector., Competing Interests: The authors have each completed and submitted an ICMJE form for disclosure of potential conflicts of interest. The authors declare that they have no competing interests, financial or otherwise, related to the current work. F.T. Filippidis and A.A. Laverty report that in the past 36 months they received personal payment (consulting fees) from World Health Organization to contribute to a systematic review on health effects of Electronic Nicotine Delivery Systems. N.S. Hopkinson reports that in the past 36 months he was Chair of Action on Smoking and Health, where A.A. Laverty is a Trustee., (© 2022 Vrinten C. et al.)

Objective: To examine risk perceptions and behavioural responses of the UK adult population during the early phase of the COVID-19 epidemic in the UK., Design: A cross-sectional survey., Setting: Conducted with a nationally representative sample of UK adults within 48 hours of the UK Government advising the public to stop non-essential contact with others and all unnecessary travel., Participants: 2108 adults living in the UK aged 18 years and over. Response rate was 84.3% (2108/2500). Data collected between 17 March and 18 March 2020., Main Outcome Measures: Descriptive statistics for all survey questions, including number of respondents and weighted percentages. Robust Poisson regression used to identify sociodemographic variation in: (1) adoption of social distancing measures, (2) ability to work from home, and (3) ability and (4) willingness to self-isolate., Results: Overall, 1992 (94.2%) respondents reported at least one preventive measure: 85.8% washed their hands with soap more frequently; 56.5% avoided crowded areas and 54.5% avoided social events. Adoption of social distancing measures was higher in those aged over 70 years compared with younger adults aged 18-34 years (adjusted relative risk/aRR: 1.2; 95% CI: 1.1 to 1.5). Those with lowest household income were three times less likely to be able to work from home (aRR: 0.33; 95% CI: 0.24 to 0.45) and less likely to be able to self-isolate (aRR: 0.92; 95% CI: 0.88 to 0.96). Ability to self-isolate was also lower in black and minority ethnic groups (aRR: 0.89; 95% CI: 0.79 to 1.0). Willingness to self-isolate was high across all respondents., Conclusions: Ability to adopt and comply with certain non-pharmaceutical interventions (NPIs) is lower in the most economically disadvantaged in society. Governments must implement appropriate social and economic policies to mitigate this. By incorporating these differences in NPIs among socioeconomic subpopulations into mathematical models of COVID-19 transmission dynamics, our modelling of epidemic outcomes and response to COVID-19 can be improved., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The European Medicine Agency granted marketing approval to 164 orphan medicinal products for rare diseases, among which 28 products intended for the treatment of hereditary metabolic diseases. Taking advantage of its privileged connection with 69 healthcare centres of excellence in this field, MetabERN, the European Reference Network for hereditary metabolic diseases, performed a survey asking health care providers from 18 European countries whether these products are available on the market, reimbursed and therefore accessible for prescription, and actually delivered in their centre., Results: Responses received from 52 centres (75%) concerned the design of treatment plans, the access to marketed products, and the barriers to delivery. Treatment options are always discussed with patients, who are often involved in their treatment plan. Most products (26/28) are available in most countries (15/18). Among the 15 broadly accessible products (88.5% of the centres), 9 are delivered to most patients (mean 70.1%), and the others to only few (16.5%). Among the 10 less accessible products (40.2% of the centres), 6 are delivered to many patients (66.7%), and 4 are rarely used (6.3%). Information was missing for 3 products. Delay between prescription and delivery is on average one month. Beside the lack of availability or accessibility, the most frequent reasons for not prescribing a treatment are patients' clinical status, characteristic, and personal choice., Conclusions: Data collected from health care providers in the MetabERN network indicate that two-third of the orphan medicines approved by EMA for the treatment of hereditary metabolic diseases are accessible to treating patients, although often less than one-half of the patients with the relevant conditions actually received the approved product to treat their disease. Thus, in spite of the remarkable achievement of many products, patients concerned by EMA-approved orphan medicinal products have persistent unmet needs, which deserve consideration. The enormous investments made by the companies to develop products, and the high financial burden for the Member States to purchase these products emphasize the importance of a scrupulous appreciation of treatment value involving all stakeholders at early stage of development, before marketing authorization, and during follow up.

Objectives: Population-based cancer screening has been described as a teachable moment for behaviour change. This research examined the effect of faecal occult blood testing (FOBT) participation on smoking, alcohol consumption, fruit and vegetable consumption and physical activity., Setting: Data were from screening-naïve men within the English Longitudinal Study of Ageing, receiving their first FOBT invitation (n = 774). Four waves of data were included in analyses (wave 4, 2008/2009 - wave 7, 2014/2015). Baseline data were from the wave prior to FOBT invitation, and follow-up data were from the next consecutive wave (two years later)., Methods: The effects of FOBT participation, time and group-by-time interactions on health behaviours were investigated using generalised estimating equations. Almost two-thirds of the sample (62.5%; n = 484) had participated in FOBT., Results: Screening participants were less likely to smoke (odds ratio (OR): 0.45, 95% confidence interval (CI): 0.29-0.68) and more likely to meet fruit and vegetable consumption guidelines (OR: 1.70, 95% CI: 1.14-2.55). Smoking decreased over time (OR: 0.74, 95% CI: 0.62-0.89), but adherence to alcohol guidelines also decreased (OR: 0.71, 95% CI: 0.53-0.91). A group-by-time interaction was found for vigorous physical activity; the odds of taking part in vigorous physical activity increased for FOBT participants, but decreased for non-participants (OR: 1.40, 95% CI: 1.01-1.95)., Conclusions: This research provides tentative support for FOBT as a teachable moment for increasing vigorous physical activity. However, overall, there was limited evidence for spontaneous improvement in multiple health behaviours following participation.

Objective: Some degree of general worry about cancer may facilitate screening participation, but specific worries about the potential consequences (e.g. treatment, death) may act as deterrents. No studies have examined these associations in the same sample. We assessed associations between general versus specific cancer worries and cancer screening participation., Methods: In 2016, a population-based cross-sectional survey of adults living in England was carried out. This paper reports analyses of a subsample (n = 1694). Measures included (i) frequency of general cancer worry, (ii) specific worries about the emotional and physical consequences of a cancer diagnosis, and (iii) specific worries about the social consequences of a cancer diagnosis. Logistic regression analyses examined their association with self-reported screening uptake among participants eligible for cervical (n = 671), breast (n = 323), and colorectal (n = 368) cancer screening., Results: Frequency of general cancer worry was not associated with screening participation. Specific worry about the emotional and physical consequences increased the odds of participants reporting regular uptake of colorectal screening (OR 1.41, 95% CI 1.04-1.90). Specific worry about the social consequences of diagnosis was negatively associated with regular attendance for cervical and breast screening in unadjusted analyses only. In adjusted models, the associations were no longer statistically significant for cervical (OR 0.82, 95% CI 0.65-1.03) or breast (OR 0.69, 95% CI 0.45-1.04) screening., Conclusions: Specific worries about cancer may be differentially associated with participation across screening programmes. Further research is needed, as interventions to optimise informed participation may be improved if the specific worries associated with low participation in each programme are understood.

Cancer screening could be an opportunity to deliver cancer prevention advice, but it is not known how such information would be received. We explored willingness to receive lifestyle advice in the context of the English National Health Service cervical, breast, and bowel (FS; flexible sigmoidoscopy) screening programmes. A population-based survey was conducted in 2016 to collect nationally representative data on willingness to receive lifestyle advice across cervical (n = 768), breast (n = 420) and FS (n = 308) screening programmes. Additional items assessed the impact of lifestyle advice on screening attendance, preference for receiving advice in the event of an abnormal screening result, and timing of advice. Most respondents were willing to receive lifestyle advice around the time of cancer screening (cervical 78.9%, breast 79.4%, FS 81.8%), and if their results were abnormal (cervical 86.3%, breast 83.0%, FS 85.1%). A small proportion indicated it may discourage future attendance (cervical 4.9%, breast 7.0%, FS 8.8%). Most preferred information to be delivered at the screening appointment (cervical 69.8%, breast 72.6%, FS 70.7%). There were no associations between sociodemographic characteristics and willingness to receive lifestyle advice at breast screening. For those intending to attend cervical screening, non-White ethnicity and higher education were associated with increased willingness to receive lifestyle advice. Women were more likely to be willing to receive advice at FS screening than men. Providing lifestyle advice at cancer screening is likely to be acceptable to the general population. The optimal approach for delivery needs careful consideration to minimise potential negative effects on screening attendance., (Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Lung cancer screening could be a 'teachable moment' for behaviour change. Little is known about how advice about smoking cessation, or other behavioural cancer risk factors, would be received in this setting., Methods: Using a population-based survey of 459 English adults (current smokers and recent quitters aged 50-75) we assessed willingness to receive lifestyle advice (about smoking, diet, weight, physical activity, alcohol consumption) at lung screening. Additional items assessed whether advice should be provided following abnormal screening results, the potential impact of advice on screening uptake, and preferred timing of advice., Results: Overall, 64% (n = 292) of participants were willing to receive lifestyle advice at lung screening. A greater proportion of participants were willing to receive advice in a scenario where results required further investigation (83%; p < 0.01). However, 14% indicated the provision of lifestyle advice would make them less willing to attend lung screening. Non-White ethnicity and greater cancer risk factor awareness were associated with willingness to receive advice (p < 0.05). Half of smokers (51%) were willing to receive cessation advice. There was also interest in advice about diet (47%), weight (43%), physical activity (32%), and alcohol consumption (17%) among people not meeting current recommendations for these behaviours. There was a preference for advice to be delivered at the screening appointment (38%, n = 108) over other time-points., Conclusions: Lung screening may offer an opportunity to provide advice about behavioural cancer risk factors. Future work should consider how to deliver effective interventions in this setting to support behaviour change, without affecting screening uptake., (Copyright © 2018 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Providing lifestyle advice at cancer screening may help reduce the cancer burden attributable to health-related behaviour. We examined determinants of willingness to receive advice about several behavioural cancer risk factors., Methods: A population-based sample of English adults eligible for cancer screening (n = 1221) completed items on willingness to receive lifestyle advice. Sociodemographic, psychological (risk perceptions, cancer risk factor awareness) and behavioural factors were used to predict interest in advice about diet, weight, physical activity, smoking and alcohol consumption., Results: Two thirds (62-67%) reported interest in advice about diet, weight, and physical activity; 17% were willing to receive advice about smoking, and 32% about alcohol consumption. Willingness to receive advice was higher in those not adhering to guidelines for weight, physical activity, smoking and alcohol consumption (all p < 0.01). Non-White ethnicity was associated with interest in advice about diet, physical activity and smoking (all p < 0.01). Willingness to receive advice about diet, weight, physical activity and alcohol consumption increased with greater recognition of cancer risk factors (all p < 0.01)., Conclusions: Willingness to receive lifestyle advice at cancer screening was high, suggesting this context may provide an opportunity to support behaviour change. Increasing awareness of cancer risk factors may facilitate interest in lifestyle advice.

Objectives In examining informed choice in cancer screening, we investigated public awareness that some screening programmes aim to prevent cancer, while others seek to detect cancer at an early stage. Methods A population-based survey of adults aged 50-70 in England (n = 1433), including data on demographic characteristics and screening experience. Participants were asked to select the main purpose of cervical, breast, and colorectal cancer screening (both faecal occult blood testing and flexible sigmoidoscopy). Results Across all four screening programmes, most people thought the main aim was to catch cancer early (71-78%). Only 18 and 14% knew that cervical screening and flexible sigmoidoscopy, respectively, are primarily preventive. Knowledge of the preventive aspect of these two programmes was low across the board, with few demographic patterns. By contrast, 78 and 73% of the sample were aware that breast screening and the faecal occult blood test, respectively, predominantly aim to detect cancer early. For these programmes, accurate knowledge was socially graded, lower in ethnic minority groups, and positively associated with previous participation in the programmes. Conclusions Our findings suggest that although awareness of the purpose of early detection screening is high, awareness that screening can prevent cancer is low across all demographic groups. Understanding the purpose of screening is a key aspect of informed choice but despite current communication strategies highlighting these differences, people do not seem to have a nuanced understanding of these differing aims. Our findings may be indicative of a broader public scepticism about the preventability of cancer.

Background: Surveys indicate quite high prevalence of cancer worry in the general population, but little is known about what it is about cancer that worries people. A better understanding of the origins of cancer worry may help elucidate previously found inconsistencies in its behavioural effect on cancer prevention, screening uptake, and help-seeking for symptoms. In this study, we explore the prevalence and population distribution of general cancer worry and worries about specific aspects of cancer previously identified., Methods: A population-based survey of 2048 English adults (18-70 years, April-May 2016), using face-to-face interviews to assess demographic characteristics, general cancer worry and twelve sources of cancer worry (adapted from an existing scale), including the emotional, physical, and social consequences of a diagnosis., Results: In general, a third of respondents (37%) never worried about cancer, 57% worried occasionally/sometimes, and 6% often/very often. In terms of specific worries, two thirds would be 'quite a bit' or 'extremely' worried about the threat to life and emotional upset a diagnosis would cause. Half would worry about surgery, radiotherapy, chemotherapy, and loss of control over life. Worries about the social consequences were less commonly anticipated: just under half would worry about financial problems or their social roles, and a quarter would be worried about effects on identity, important relationships, gender role, and sexuality. Women and younger people reported more frequent worry about getting cancer, and would be more worried about the emotional, physical, and social consequences of a cancer diagnosis (p < .001). Those from ethnic minority backgrounds reported less frequent worry about getting cancer than their white counterparts, but would be equally worried about the emotional and physical impact of a cancer diagnosis, and worried more about the social consequences of a cancer diagnosis (p < .05)., Conclusions: The majority of English adults worry at least occasionally about getting cancer, and would be most worried about the emotional and physical impact of a cancer diagnosis. Distinguishing between the various worries that cancer can evoke may help inform efforts to allay undue worries in those who are deterred by them from engaging with cancer prevention and early detection.

Objective: Communication of cancer information is an important element of cancer control, but cancer fear may lead to information avoidance, especially when coping is low. We examined the association between cancer fear and cancer information avoidance, and tested whether this was exacerbated by psychosocial stress., Design: Cross-sectional survey of 1258 population-based adults (58-70 years) in England., Main Outcome Measures: Cancer fear (intensity and frequency), perceived psychosocial stress and cancer information avoidance. Control variables were age, gender, ethnicity, marital status and education., Results: A quarter (24%) of respondents avoided cancer information. Ordinal logistic regression analyses showed main effects of psychosocial stress (OR = 1.17, 95% CI 1.07-1.29) and cancer fear: cancer information avoidance was lowest in those with no cancer fear (13%), followed by those with moderate (24%; OR = 2.15, 95% CI: 1.49-3.12), and high cancer fear (35%; OR = 3.90, 95% CI: 2.65-5.73). In the adjusted model, the interaction between cancer fear and stress was significant (OR = 1.14, 95% CI 1.004-1.29, p < .05): 40% of those with high fear/high stress avoided cancer information compared with 29% with high fear/low stress., Conclusion: Cancer fear and psychosocial stress interact to produce disengagement with cancer-related information, highlighting the importance of affective processes to cancer control efforts.

Objective: Cancer is still widely feared and often associated with death. Fatalistic beliefs adversely affect help-seeking for cancer symptoms and engagement in cancer prevention. This study aims to understand middle-aged and older adults' first association with the word "cancer" and their relationship with sociodemographic factors, cancer fear, and cancer information avoidance., Methods: We conducted a cross-sectional survey of 1464 community-based adults aged 50 to 70 living in England in April 2015. First associations with cancer were measured qualitatively and analysed using content analysis. We used binary logistic regression to analyse associations between the most common first association of cancer and sociodemographic characteristics, cancer fear, and cancer information avoidance., Results: Cancer was most commonly associated with "death" (26%). Respondents with lower levels of education, living in the Midlands or North of England where cancer mortality is higher, or with close friends or family members with a cancer history, were more likely to associate cancer with death. Cancer fear was significantly associated with death associations, but cancer information avoidance was not., Conclusions: Despite improved cancer outcomes, middle-aged and older adults often associate cancer with death. Further efforts to decrease fatalistic associations in this age group may be needed., (© 2017 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: Cancer has long inspired fear, but the effect of fear is not well understood; it seems both to facilitate and to deter early diagnosis behaviours. To elucidate fear's behavioural effects, we systematically reviewed and synthesised qualitative literature to explore what people fear about cancer., Methods: We searched Medline, Embase, PsycInfo, Web of Science, AnthroSource, and Anthrobase for studies on cancer fear in breast, cervical, and colorectal cancer screening and analysed 102 studies from 26 countries using thematic synthesis., Results: Fears of cancer emanated from a core view of cancer as a vicious, unpredictable, and indestructible enemy, evoking fears about its proximity, the (lack of) strategies to keep it at bay, the personal and social implications of succumbing, and fear of dying from cancer., Conclusions: This view of cancer as 'an enemy' reprises the media's 'war on cancer' theme and may affect the acceptance of cancer early detection and prevention messages, since cancer's characteristics influenced whether 'fight' or 'flight' was considered appropriate., (© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.)

Background: Inexpensive medicines with a long history of use may currently be prescribed off-label for rare indications. Reimbursement is at the discretion of health insurance companies, and may be unpredictable. The example addressed was ephedrine as add-on treatment for myasthenia gravis. Stakeholders from academia, a patient organization, the Dutch National Health Care Institute (NHCI) and Dutch Medicines Evaluation Board (MEB) advised on the trial design. The NHCI and MEB agreed to provide scientific advice on the suitability of the evidence generated by the trial, for regulatory decisions. This paper describes the feasibility of the trial and the utility of its aggregated results., Results: The trialists experienced the trial as feasible. Retrospective interviews showed that the trial as performed was acceptable to patients. The treatment effect in the primary outcome measure, muscle strength, was statistically significant when inferred to the population level, though the effect size was modest. Secondary outcomes were statistically significant in a preplanned, fixed effects analysis within the four patients. The NHCI advised that it could potentially make reimbursement decisions based on the Fitting Evidence framework, should the trialists decide to apply for reimbursement. The MEB advised that for a licensing decision, the N-of-1 design is a last-resort option for demonstrating treatment benefit in a rare disease. N-of-1 trials alone do not provide enough evidence on potential risk. The MEB found the current trial inconclusive. It suggested doing a 2-armed trial of longer duration, possibly with a different outcome measure (postponement of corticosteroid use). It suggested engaging a consultancy or commercial sponsor, should the trialists decide to seek market authorization of the drug., Conclusions: In theory, evidence from aggregated N-of-1 trials is suitable for use in licensing and reimbursement decisions. The current example illustrates differences in interpretation of N-of-1 results by health authorities. In the era of personalized medicine, consensus is required on the interpretation of data from study designs geared to small groups. Demonstrating effectiveness of inexpensive medicines in small populations may require involvement of non-commercial parties, to preserve affordability.

We studied the effect and safety of ephedrine as add-on treatment for patients with myasthenia gravis with acetylcholine receptor antibodies (AChR MG), who do not sufficiently respond to standard treatment. Four patients with AChR MG were included in a placebo-controlled, double-blind, and randomised, multiple crossover series of n-of-1 trials. Each n-of-1 trial consisted of 3 cycles, in which two 5-day intervention periods were followed by 2 days washout. In each cycle, ephedrine 50 mg daily in 2 doses was compared with placebo in the alternate treatment period. Primary outcome was a change in QMG score. Add-on treatment with ephedrine compared with placebo improved QMG score by 1.0 point (95% confidence interval 0.21-1.79), which was significant for the group of trial patients as well as for the population treatment effect. Ephedrine also showed a significant trial average treatment effect for all secondary outcomes, improving MG Composite by 2.7, MG-ADL by 1.0 and VAS score for muscle strength by 1.1. Adverse events were mild and included palpitations, tremor and restlessness. Although all ECGs were normal, ephedrine prolonged the corrected QT interval. Ephedrine as add-on treatment for myasthenia gravis resulted in a small but consistent reduction of symptoms and weakness in patients with moderate disease severity., (Copyright © 2016 Elsevier B.V. All rights reserved.)

Background: Cancer fear and fatalism are believed to be higher in ethnic minorities and may contribute to lower engagement with cancer prevention and early detection. We explored the levels of cancer fear and fatalism in six ethnic groups in the United Kingdom and examined the contribution of acculturation and general fatalism., Methods: A cross-sectional survey of 720 White British, Caribbean, African, Indian, Pakistani, and Bangladeshi women (120 of each) was conducted. Three items assessed cancer fear and two cancer fatalism. Acculturation was assessed using (self-reported) migration status, ability to speak English, and understanding of health leaflets; general fatalism with a standard measure., Results: Relative to White British women, African and Indian women were more fearful of cancer, Bangladeshi women less fearful, and Pakistani and Caribbean women were similar to White British women. Cancer fatalism was higher in all the ethnic minority groups compared with White British women. Less acculturated women were less likely to worry (ORs 0.21-0.45, all P<0.05) or feel particularly afraid (ORs 0.11-0.31, all P<0.05) but more likely to feel uncomfortable about cancer (ORs 1.97-3.03, all P<0.05). Lower acculturation (ORs 4.30-17.27, P<0.05) and general fatalism (OR 2.29, P<0.05) were associated with the belief that cancer is predetermined., Conclusions: In general, cancer fear and fatalism are more prevalent among ethnic minority than White British women and even more so in less acculturated ethnic minorities. This may affect their participation in cancer prevention and early detection.

Objectives: Despite improved outcomes, cancer remains widely feared, often because of its association with a long and protracted death as opposed to the quick death that people associate with that other common cause of adult mortality: heart disease. Former editor-in-chief of the BMJ Richard Smith's view that 'cancer is the best way to die' therefore attracted much criticism. We examined middle-aged and older adults' agreement with this view and compared their attitudes towards dying from cancer versus heart disease in terms of which was a good death., Methods: This study was part of an online survey (February 2015) in a United Kingdom (UK) population sample of 50- to 70-year olds (n = 391), with sampling quotas for gender and education. Five characteristics of 'a good death' were selected from the end-of-life literature. Respondents were asked to rate the importance of each characteristic for their own death to ensure their relevance to a population sample and the likelihood of each for death from cancer and heart disease. We also asked whether they agreed with Smith's view., Results: At least 95% of respondents considered the selected five characteristics important for their own death. Death from cancer was rated as more likely to provide control over what happens (p < 0.001), control over pain and other symptoms (p < 0.01), time to settle affairs (p < 0.001), and time to say goodbye to loved ones (p < 0.001) compared with death from heart disease, but there were no differences in expectation of living independently until death (p > 0.05). Almost half (40%) agreed that cancer is 'the best way to die', with no differences by age (p = 0.40), gender (p = 0.85), or education (p = 0.27)., Conclusion: Despite the media commotion, a surprisingly high proportion of middle-aged and older adults viewed cancer as 'the best way to die' and rated cancer death as better than heart disease. Given that one in two of us are likely to be diagnosed with cancer, conversations about a good death from cancer may in a small way mitigate fear of cancer. Future research could explore variations by type of cancer or heart disease and by previous experience of these illnesses in others., (Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: To compare self-reported with objectively recorded participation in Faecal Occult Blood testing (FOBt) colorectal cancer (CRC) screening in a national programme., Methods: Survey respondents living in England who were eligible for screening were asked in face-to-face interviews if they had ever been invited to do a CRC screening test, how many times they had been invited, and how many times they had participated. National Health Service (NHS) Bowel Cancer Screening Programme (BCSP) records were consulted for respondents who had consented to a record check. The outcome measures were 'ever uptake' (responded to ≥1 invitation), 'repeat uptake' (responded to ≥2 invitations), and 'consistent uptake' (responded to all invitations)., Results: In the verified group, self-reported ever uptake was highly consistent with recorded ever uptake (87.0% vs. 87.8%). Among those who indicated that they had been invited more than once, self-reported repeat uptake was 89.8% compared with 84.8% recorded repeat uptake. Among those with more than one recorded invitation, self-reported repeat uptake was 72.7% compared with 77.2% recorded repeat uptake, and self-reported consistent uptake was 81.6% compared with 65.6% recorded consistent uptake., Conclusion: Our results suggest that people can accurately report whether they have ever taken part in CRC screening. The vast majority of those whose records were verified could also accurately report whether they had taken part in screening at least twice. They were somewhat less accurate in reporting whether they had responded to all screening invitations., (© The Author(s) 2015.)

Introduction: Myasthenia gravis (MG), a rare neuromuscular disease, is often initially treated using acetylcholinesterase inhibitors. Patients who do not respond adequately depend on the use of corticosteroids or other immunosuppressive medication, but these may have serious side effects. Clinical observations suggest that ephedrine can diminish, postpone or even prevent the need for immunosuppressive therapy when added to acetylcholinesterase inhibitors or low-dose prednisone. In the Netherlands, ephedrine is not licensed for MG nor is reimbursement guaranteed. MG is a rare condition, and ephedrine might be indicated only in a subset of patients. Thus, randomised controlled trials comparing large groups are difficult to conduct. We, therefore, aim to aggregate data from a small series of n-of-1 trials (also known as single patient trials) to assess the effect of ephedrine as add-on treatment for MG., Methods and Analysis: Single-centre, placebo-controlled, double-blind, randomised, multiple crossover n-of-1 studies in 4 adult patients with generalised MG who show inadequate improvement on pyridostigmine and/or immunosuppressive drugs. Each n-of-1 trial has 3 cycles of two 5-day intervention periods., Treatment: 25 mg ephedrine or placebo, twice daily., Main Outcome Measure: Quantitative Myasthenia Gravis (QMG) test., Statistical Analysis: fixed effects linear model for QMG for all patients combined., Secondary Outcome Measures: Clinical: effects on MG-Composite and MG-Activities of Daily Living (MG-ADL) scales; QMG at individual level; adverse events. Acceptability of trial design: number of patients eligible and enrolled; number of treatment cycles completed; patients' and caregivers' experiences., Ethics and Dissemination: This study was approved by the Medical Ethics Committee of Leiden University Medical Center, No. P14.108. Results of the trial will be reported in a peer-reviewed publication. Regulatory stakeholders will comment on the suitability of the trial for market authorisation and reimbursement purposes., Trial Registration Number: This study is registered under EudraCT number 2014-001355-23, protocol no. 40960, V.1.0, registration date 27 March 2014., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Background: Low uptake of colorectal cancer (CRC) screening is a cause for concern. This study explored people's anticipated response to receiving the test kit to shed light on past screening uptake and help inform future interventions to increase participation., Methods: Face-to-face interviews were conducted with respondents living in England who were eligible for CRC screening as part of a population-based 'omnibus' survey. Respondents were asked what they would do ('micro actions') if they received a CRC screening test kit through the mail (apart from completing it or not), and their unprompted responses were coded (multiple codes allowed). Past 'ever' uptake and screening intention were also recorded. The final analysis included 1237 respondents aged 60-70., Results: Respondents who said that they would decide after some thought' (p < .001), 'put [it] aside to deal with later' (p < .001), 'put it on the "to do list/ pile"' (p < .05) or 'discuss it with a health care professional' (p < .01) had decreased odds of having participated. Those who said they would 'read the instruction leaflet' (p < .001), 'put the kit near the toilet' (p < .001) or 'decide when to do the test' (p < .05) were more likely to have taken part in CRC screening. With the exception of 'decide when to do the test' and 'discuss it with a health care professional', all associations with past uptake remained significant after adjusting for other micro actions and screening intention. 'Make a note somewhere (to remind myself)' was mentioned by less than 1 % of respondents., Conclusions: Delay-causing and preparatory micro actions were associated with past CRC screening uptake. Self-regulatory micro actions (e.g. making a note to remind oneself) were rarely mentioned as responses to receiving a screening invitation. Interventions aimed at reducing delay and facilitating preparatory and self-regulatory behaviours might help increase uptake. The behaviour-focused survey method is a promising avenue for future health behaviour research.

Background: Cancer fear has been associated with higher and lower screening uptake across different studies, possibly because different aspects of cancer fear have different effects on intentions versus behavior. The present study examined associations of three aspects of cancer fear with intention and uptake of endoscopic screening for colorectal cancer., Methods: A subsample of UK Flexible Sigmoidoscopy (FS) Trial participants received a baseline questionnaire that included three cancer fear items from a standard measure asking if: (i) cancer was feared more than other diseases, (ii) cancer worry was experienced frequently, and (iii) thoughts about cancer caused discomfort. Screening intention was assessed by asking participants whether, if invited, they would accept an invitation for FS screening. Positive responders were randomized to be invited or not in a 1:2 ratio. The behavioral outcome was clinic-recorded uptake. Control variables were age, gender, ethnicity, education, and marital status., Results: The questionnaire return rate was 60% (7,971/13,351). The majority (82%) intended to attend screening; 1,920 were randomized to receive an invitation, and 71% attended. Fearing cancer more than other diseases (OR = 2.32, P < 0.01) and worrying a lot about cancer (OR = 2.34, P < 0.01) increased intentions to attend screening, but not uptake. Finding thoughts about cancer uncomfortable did not influence intention, but predicted lower uptake (OR = 0.72, P < 0.01)., Conclusions: Different aspects of cancer fear have different effects on the decision and action processes leading to screening participation., Impact: Knowledge of the different behavioral effects of cancer fear may aid the design of effective public health messages., (©2015 American Association for Cancer Research.)

Background: This study examined if and how sociodemographic differences in colorectal cancer (CRC) screening uptake can be explained by social cognitive factors., Methods: Face-to-face interviews were conducted with individuals aged 60-70 years (n = 1309) living in England as part of a population-based omnibus survey., Results: There were differences in screening uptake by SES, marital status, ethnicity, and age but not by gender. Perceived barriers (stand. b = -0.40, p < 0.001), social norms (stand. b = 0.33, p < 0.001), and screening knowledge (stand. b = 0.17, p < 0.001) had independent associations with uptake. SES differences in uptake were mediated through knowledge, social norms, and perceived barriers. Ethnic differences were mediated through knowledge. Differences in uptake by marital status were primarily mediated through social norms and to a lesser extent through knowledge. Age differences were largely unmediated, except for a small mediated effect via social norms., Conclusions: Sociodemographic differences in CRC screening uptake were largely mediated through social cognitive factors. Impact. Our findings suggest that multifaceted interventions might be needed to reduce socioeconomic inequalities. Ethnic differences might be reduced through improved screening knowledge. Normative interventions could emphasise screening as an activity endorsed by important others outside the immediate family to appeal to a wider audience.

Background: Myasthenia is a condition in which neuromuscular transmission is affected by antibodies against neuromuscular junction components (autoimmune myasthenia gravis, MG; and neonatal myasthenia gravis, NMG) or by defects in genes for neuromuscular junction proteins (congenital myasthenic syndromes, CMSs). Clinically, some individuals seem to benefit from treatment with ephedrine, but its effects and adverse effects have not been systematically evaluated., Objectives: To assess the effects and adverse effects of ephedrine in people with autoimmune MG, transient neonatal MG, and the congenital myasthenic syndromes., Search Methods: On 17 November 2014, we searched the Cochrane Neuromuscular Disease Group Specialized Register, the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE and EMBASE. We also searched reference lists of articles, conference proceedings of relevant conferences, and prospective trial registers. In addition, we contacted manufacturers and researchers in the field., Selection Criteria: We considered randomised controlled trials (RCTs) and quasi-RCTs comparing ephedrine as a single or add-on treatment with any other active treatment, placebo, or no treatment in adults or children with autoimmune MG, NMG, or CMSs., Data Collection and Analysis: Two review authors independently assessed study design and quality, and extracted data. We contacted study authors for additional information. We collected information on adverse effects from included articles, and contacted authors., Main Results: We found no RCTs or quasi-RCTs, and therefore could not establish the effect of ephedrine on MG, NMG and CMSs. We describe the results of 53 non-randomised studies narratively in the Discussion section, including observations of endurance, muscle strength and quality of life. Effects may differ depending on the type of myasthenia. Thirty-seven studies were in participants with CMS, five in participants with MG, and in 11 the precise form of myasthenia was unknown. We found no studies for NMG. Reported adverse effects included tachycardia, sleep disturbances, nervousness, and withdrawal symptoms., Authors' Conclusions: There was no evidence available from RCTs or quasi-RCTs, but some observations from non-randomised studies are available. There is a need for more evidence from suitable forms of prospective RCTs, such as series of n-of-one RCTs, that use appropriate and validated outcome measures.