Publications by authors named "Lesley McGregor"

55 Publications

Investigating the Effects of Threatening Language, Message Framing, and Reactance in Opt-Out Organ Donation Campaigns.

Ann Behav Med 2021 May 3. Epub 2021 May 3.

Division of Psychology, Faculty of Natural Sciences, University of Stirling, Stirling FK9 4LA, UK.

Background: Under opt-out organ donation policies, individuals are automatically considered to have agreed to donate their organs in the absence of a recorded opt-out decision. Growing evidence suggests that the language used within organ donation campaigns influences donor intentions and decision-making.

Purpose: As awareness campaigns to promote opt-out consent in the UK are ongoing, the objectives of this study were to investigate the effect of language and message framing used in opt-out organ donation campaigns on donor intentions and psychological reactance.

Methods: Individuals from Scotland and England (N = 1,350) completed this online experiment. Participants were randomized to view one of four messages, designed in the format of a newspaper article, which described the upcoming opt-out system. This followed a 2 × 2 design whereby the degree of threatening language (high threat vs. low threat) and message framing (loss vs. gain) of the newspaper article was experimentally manipulated. Measures of intention (pre-exposure and postexposure) and postmessage reactance (threat to freedom and anger and counter-arguing) were obtained.

Results: A mixed analysis of variance revealed a significant Group × Time interaction on donor intentions; post hoc analysis revealed that intentions significantly decreased for individuals exposed to the High threat × Loss frame article but significantly increased for those exposed to the High threat × Gain frame article.

Conclusions: In campaigns to promote opt-out legislation, high-threat language combined with loss-frame messages should be avoided. If high-threat language is used, gain-frame messaging that highlights the benefits of organ donation should also be incorporated.
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http://dx.doi.org/10.1093/abm/kaab017DOI Listing
May 2021

Ethnic inequalities in older adults bowel cancer awareness: findings from a community survey conducted in an ethnically diverse region in England.

BMC Public Health 2021 Mar 16;21(1):513. Epub 2021 Mar 16.

Research Department of Behavioural Science and Health, University College London, London, WC1E 7HB, UK.

Background: To date, research exploring the public's awareness of bowel cancer has taken place with predominantly white populations. To enhance our understanding of how bowel cancer awareness varies between ethnic groups, and inform the development of targeted interventions, we conducted a questionnaire study across three ethnically diverse regions in Greater London, England.

Methods: Data were collected using an adapted version of the bowel cancer awareness measure. Eligible adults were individuals, aged 60+ years, who were eligible for screening. Participants were recruited and surveyed, verbally, by staff working at 40 community pharmacies in Northwest London, the Harrow Somali association, and St. Mark's Bowel Cancer Screening Centre. Associations between risk factor, symptom and screening awareness scores and ethnicity were assessed using multivariate regression.

Results: 1013 adults, aged 60+ years, completed the questionnaire; half were of a Black, Asian or Minority ethnic group background (n = 507; 50.0%). Participants recognised a mean average of 4.27 of 9 symptoms and 3.99 of 10 risk factors. Symptom awareness was significantly lower among all ethnic minority groups (all p's < 0.05), while risk factor awareness was lower for Afro-Caribbean and Somali adults, specifically (both p's < 0.05). One in three adults (n = 722; 29.7%) did not know there is a Bowel Cancer Screening Programme. Bowel screening awareness was particularly low among Afro-Caribbean and Somali adults (both p's < 0.05).

Conclusion: Awareness of bowel cancer symptoms, risk factors and screening varies by ethnicity. Interventions should be targeted towards specific groups for whom awareness of screening and risk factors is low.
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http://dx.doi.org/10.1186/s12889-021-10536-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7967942PMC
March 2021

Paediatric genomic testing: Navigating medicare rebatable genomic testing.

J Paediatr Child Health 2021 04 10;57(4):477-483. Epub 2021 Feb 10.

Specialty of Genomic Medicine, University of Sydney, Sydney, New South Wales, Australia.

Genomic testing for a genetic diagnosis is becoming standard of care for many children, especially those with a syndromal intellectual disability. While previously this type of specialised testing was performed mainly by clinical genetics teams, it is increasingly being 'mainstreamed' into standard paediatric care. With the introduction of a new Medicare rebate for genomic testing in May 2020, this type of testing is now available for paediatricians to order, in consultation with clinical genetics. Children must be aged less than 10 years with facial dysmorphism and multiple congenital abnormalities or have global developmental delay or moderate to severe intellectual disability. This rebate should increase the likelihood of a genetic diagnosis, with accompanying benefits for patient management, reproductive planning and diagnostic certainty. Similar to the introduction of chromosomal microarray into mainstream paediatrics, this genomic testing will increase the number of genetic diagnoses, however, will also yield more variants of uncertain significance, incidental findings, and negative results. This paper aims to guide paediatricians through the process of genomic testing, and represents the combined expertise of educators, clinical geneticists, paediatricians and genomic pathologists around Australia. Its purpose is to help paediatricians navigate choosing the right genomic test, consenting patients and understanding the possible outcomes of testing.
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http://dx.doi.org/10.1111/jpc.15382DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8049061PMC
April 2021

Gene-specific facial dysmorphism in Axenfeld-Rieger syndrome caused by FOXC1 and PITX2 variants.

Am J Med Genet A 2021 02 24;185(2):434-439. Epub 2020 Nov 24.

Department of Ophthalmology, Flinders University, Flinders Medical Centre, Adelaide, South Australia, Australia.

Axenfeld-Rieger syndrome is a genetic condition characterized by ocular and systemic features and is most commonly caused by variants in the FOXC1 or PITX2 genes. Facial dysmorphism is part of the syndrome but the differences between both genes have never been systematically assessed. Here, 11 facial traits commonly reported in Axenfeld-Rieger syndrome were assessed by five clinical geneticists blinded to the molecular diagnosis. Individuals were drawn from the Australian and New Zealand Registry of Advanced Glaucoma in Australia or recruited through the Genetic and Ophthalmology Unit of l'Azienda Socio-Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda in Italy. Thirty-four individuals from 18 families were included. FOXC1 variants were present in 64.7% of individuals and PITX2 variants in 35.3% of individuals. A thin upper lip (55.9%) and a prominent forehead (41.2%) were common facial features shared between both genes. Hypertelorism/telecanthus (81.8% vs 25.0%, p = 0.002) and low-set ears (31.8% vs 0.0%, p = 0.036) were significantly more prevalent in individuals with FOXC1 variants compared with PITX2 variants. These findings may assist clinicians in reaching correct clinical and molecular diagnoses, and providing appropriate genetic counseling.
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http://dx.doi.org/10.1002/ajmg.a.61982DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7839469PMC
February 2021

Patient experience of gastrointestinal endoscopy: informing the development of the Newcastle ENDOPREM™.

Frontline Gastroenterol 2020 13;11(3):209-217. Epub 2020 Jan 13.

Department of Gastroenterology, South Tyneside District Hospital, South Tyneside and Sunderland NHS Foundation Trust, South Shields, UK.

Background: Measuring patient experience is important for evaluating the quality of patient care, identifying aspects requiring improvement and optimising patient outcomes. Patient Reported Experience Measures (PREMs) should, ideally, be patient derived, however no such PREMs for gastrointestinal (GI) endoscopy exist. This study explored the experiences of patients undergoing GI endoscopy and CT colonography (CTC) in order to: identify aspects of care important to them; determine whether the same themes are relevant across investigative modalities; develop the framework for a GI endoscopy PREM.

Methods: Patients aged ≥18 years who had undergone oesophagogastroduodenoscopy (OGD), colonoscopy or CTC for symptoms or surveillance (but not within the national bowel cancer screening programme) in one hospital were invited to participate in semi-structured interviews. Recruitment continued until data saturation. Inductive thematic analysis was undertaken.

Results: 35 patients were interviewed (15 OGD, 10 colonoscopy, 10 CTC). Most patients described their experience chronologically, and five 'procedural stages' were evident: before attending for the test; preparing for the test; at the hospital, before the test; during the test; after the test. Six themes were identified: anxiety; expectations; choice & control; communication & information; comfort; embarrassment & dignity. These were present for all three procedures but not all procedure stages. Some themes were inter-related (eg, expectations & anxiety; communication & anxiety).

Conclusion: We identified six key themes encapsulating patient experience of GI procedures and these themes were evident for all procedures and across multiple procedure stages. These findings will be used to inform the development of the Newcastle ENDOPREM™.
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http://dx.doi.org/10.1136/flgastro-2019-101321DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7223270PMC
January 2020

'It's like being conscripted, one volunteer is better than 10 pressed men': A qualitative study into the views of people who plan to opt-out of organ donation.

Br J Health Psychol 2020 05 30;25(2):257-274. Epub 2020 Jan 30.

Division of Psychology, Faculty of Natural Sciences, University of Stirling, UK.

Objectives To overcome the shortage of organ donors, Scotland and England are introducing an opt-out organ donor registration system in 2020. This means individuals will be automatically considered to consent for donation unless they actively opt-out of the register. Research has found that emotional barriers play a key role in donor decisions under opt-in legislation, yet little is known about factors that influence donor decisions under opt-out consent. Our objectives were to investigate attitudes towards organ donation and opt-out consent from individuals who plan to opt-out, and to explore the reasons why they plan to opt-out. Design Qualitative interview study. Methods Semi-structured interviews were conducted with 15 individuals from Scotland (n = 14) and England (n = 1) who self-reported the intention to opt-out of the register following the legislative change to opt-out. The interviews were transcribed verbatim and analysed using thematic analysis. Results Three main themes were identified: (1) consent versus coercion, which describes the perception of freedom of choice under an opt-in system and fears of 'government interference' and threatened autonomy under opt-out, (2) self-protection, encompassing fears of medical mistrust, bodily integrity concerns, and apprehension regarding the recipient selection process, and lastly, (3) 'riddled with pitfalls', which includes the notion that opt-out consent may increase susceptibility of stigma and reproach when registering an opt-out decision. Conclusions This study reinforces existing opt-in literature surrounding medical mistrust and bodily integrity concerns. A threat to one's autonomous choice and heightened reactance arising from perceptions of unwarranted government control have emerged as novel barriers. Statement of contribution What is already known about this subject? Although around 90% of individuals in the United Kingdom support organ donation, just 40% are actively registered as donors. As part of measures to improve rates of organ transplantation, Scotland and England are moving to an opt-out organ donation consent system in 2020. Existing research has shown that feelings and emotions are important factors that influence donor relevant decisions under the current opt-in system, but little research has explored potential deterrents under the new plans for opt-out consent. Minimizing the number of people opting out of the donor register is key to ensure sustained rates of transplantation. What does this study add? This study explored why people plan to opt-out of the new system in Scotland and England. Medical mistrust and bodily integrity concerns remain as salient barriers under opt-out laws. Fears of unwarranted government control and a perceived threat to one's freedom of choice emerged as a novel barrier.
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http://dx.doi.org/10.1111/bjhp.12406DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216962PMC
May 2020

Clinical spectrum of individuals with pathogenic NF1 missense variants affecting p.Met1149, p.Arg1276, and p.Lys1423: genotype-phenotype study in neurofibromatosis type 1.

Hum Mutat 2020 01 26;41(1):299-315. Epub 2019 Oct 26.

Department of Dermatology and Venereology, Policlinico Umberto I, Sapienza University of Rome, Rome, Italy.

We report 281 individuals carrying a pathogenic recurrent NF1 missense variant at p.Met1149, p.Arg1276, or p.Lys1423, representing three nontruncating NF1 hotspots in the University of Alabama at Birmingham (UAB) cohort, together identified in 1.8% of unrelated NF1 individuals. About 25% (95% confidence interval: 20.5-31.2%) of individuals heterozygous for a pathogenic NF1 p.Met1149, p.Arg1276, or p.Lys1423 missense variant had a Noonan-like phenotype, which is significantly more compared with the "classic" NF1-affected cohorts (all p < .0001). Furthermore, p.Arg1276 and p.Lys1423 pathogenic missense variants were associated with a high prevalence of cardiovascular abnormalities, including pulmonic stenosis (all p < .0001), while p.Arg1276 variants had a high prevalence of symptomatic spinal neurofibromas (p < .0001) compared with "classic" NF1-affected cohorts. However, p.Met1149-positive individuals had a mild phenotype, characterized mainly by pigmentary manifestations without externally visible plexiform neurofibromas, symptomatic spinal neurofibromas or symptomatic optic pathway gliomas. As up to 0.4% of unrelated individuals in the UAB cohort carries a p.Met1149 missense variant, this finding will contribute to more accurate stratification of a significant number of NF1 individuals. Although clinically relevant genotype-phenotype correlations are rare in NF1, each affecting only a small percentage of individuals, together they impact counseling and management of a significant number of the NF1 population.
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http://dx.doi.org/10.1002/humu.23929DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6973139PMC
January 2020

Preference for Deliberation and Perceived Usefulness of Standard- and Narrative-Style Leaflet Designs: Implications for Equitable Cancer-Screening Communication.

Ann Behav Med 2020 02;54(3):193-201

Division of Psychology, Faculty of Natural Sciences, University of Stirling, Stirling, UK.

Background: In the UK, cancer-screening invitations are mailed with information styled in a standard, didactic way to allow for informed choice. Information processing theory suggests this "standard style" could be more appealing to people who prefer deliberative thinking. People less likely to engage in deliberative thinking may be disenfranchised by the design of current standard-style information.

Purpose: To examine the distribution of preference for deliberative thinking across demographic groups (Study 1) and explore associations between preference for deliberative thinking and perceived usefulness of standard- and narrative-style screening information (Study 2).

Methods: In Study 1, adults aged 45-59 (n = 4,241) were mailed a questionnaire via primary care assessing preference for deliberative thinking and demographic characteristics. In Study 2, a separate cohort of adults aged 45-59 (n = 2,058) were mailed standard- and narrative-style leaflets and a questionnaire assessing demographic characteristics, preference for deliberative thinking, and perceived leaflet usefulness. Data were analyzed using multiple regression.

Results: In Study 1 (n = 1,783) and Study 2 (n = 650), having lower socioeconomic status, being a women, and being of nonwhite ethnicity was associated with lower preference for deliberative thinking. In Study 2, the standard-style leaflet was perceived as less useful among participants with lower preference for deliberative thinking, while perceived usefulness of the narrative-style leaflet did not differ by preference for deliberative thinking.

Conclusions: Information leaflets using a standard style may disadvantage women and those experiencing greater socioeconomic deprivation. More work is required to identify design styles that have a greater appeal for people with low preference for deliberative thinking.
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http://dx.doi.org/10.1093/abm/kaz039DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7035211PMC
February 2020

Predictors of intention translation in flexible sigmoidoscopy screening for colorectal cancer.

Health Psychol 2019 Dec 26;38(12):1083-1095. Epub 2019 Sep 26.

Department of Behavioural Science and Health.

Objective: This prospective study aimed to identify predictors of intention and subsequent attendance of flexible sigmoidoscopy screening using constructs derived from the Health Belief Model (HBM).

Method: A total of 4,330 people aged 54 years and registered at 1 of 83 participating English general practices were sent a preinvitation questionnaire to assess sociodemographics, HBM variables including perceived benefits, barriers, seriousness, health motivation, and external cues to action as well a range of other constructs and personal characteristics known to relate to cancer screening.

Results: Of the 1,578 respondents (36.4%), 1,555 (98.5%) answered the intention question: 52.9% stated definitely yes, 38.1% probably yes, 6.8% probably not, and 2.2% definitely not. Intentions were positively associated with a higher score on a scale of benefits (odds ratio [OR] = 4.62; 95% confidence intervals [CI; 3.24, 6.59]) and health motivation, that is, interest in other ways of preventing colorectal cancer (OR = 2.61; 95% CI [1.62, 4.22]), while a higher score on perceived barriers (OR = 0.19; 95% CI [0.12, 0.31]) and currently following recommended healthy lifestyle behaviors (OR = 0.31; 95% CI [0.16, 0.59]) were negatively associated. Attendance was verified for 922 intenders (65.2%) of whom 737 (79.9%) attended. Attendance was predicted by health motivation (OR = 1.75; 95% CI [1.07, 2.86]), perceived benefits (OR = 1.82; 95% CI [1.37, 2.43]), perceived barriers (OR = 0.47; 95% CI [0.32, 0.69]), individual-level deprivation (OR = 0.26; 95% CI [0.14, 0.50]), and having diabetes (OR = 0.48; 95% CI [0.25, 0.94]).

Conclusion: This study supported the usefulness of the HBM in predicting cancer screening and was further enhanced by adding non-HBM variables such as individual socioeconomic deprivation and comorbidities. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
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http://dx.doi.org/10.1037/hea0000793DOI Listing
December 2019

Genetic abnormalities in a large cohort of Coffin-Siris syndrome patients.

J Hum Genet 2019 Dec 17;64(12):1173-1186. Epub 2019 Sep 17.

Asahikawa-Kosei General Hospital, Hokkaido, Japan.

Coffin-Siris syndrome (CSS, MIM#135900) is a congenital disorder characterized by coarse facial features, intellectual disability, and hypoplasia of the fifth digit and nails. Pathogenic variants for CSS have been found in genes encoding proteins in the BAF (BRG1-associated factor) chromatin-remodeling complex. To date, more than 150 CSS patients with pathogenic variants in nine BAF-related genes have been reported. We previously reported 71 patients of whom 39 had pathogenic variants. Since then, we have recruited an additional 182 CSS-suspected patients. We performed comprehensive genetic analysis on these 182 patients and on the previously unresolved 32 patients, targeting pathogenic single nucleotide variants, short insertions/deletions and copy number variations (CNVs). We confirmed 78 pathogenic variations in 78 patients. Pathogenic variations in ARID1B, SMARCB1, SMARCA4, ARID1A, SOX11, SMARCE1, and PHF6 were identified in 48, 8, 7, 6, 4, 1, and 1 patients, respectively. In addition, we found three CNVs including SMARCA2. Of particular note, we found a partial deletion of SMARCB1 in one CSS patient and we thoroughly investigated the resulting abnormal transcripts.
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http://dx.doi.org/10.1038/s10038-019-0667-4DOI Listing
December 2019

Deleterious de novo variants of X-linked ZC4H2 in females cause a variable phenotype with neurogenic arthrogryposis multiplex congenita.

Hum Mutat 2019 12 21;40(12):2270-2285. Epub 2019 Aug 21.

Department of Medical Genetics, Haukeland University Hospital, Bergen, Norway.

Pathogenic variants in the X-linked gene ZC4H2, which encodes a zinc-finger protein, cause an infrequently described syndromic form of arthrogryposis multiplex congenita (AMC) with central and peripheral nervous system involvement. We present genetic and detailed phenotypic information on 23 newly identified families and simplex cases that include 19 affected females from 18 families and 14 affected males from nine families. Of note, the 15 females with deleterious de novo ZC4H2 variants presented with phenotypes ranging from mild to severe, and their clinical features overlapped with those seen in affected males. By contrast, of the nine carrier females with inherited ZC4H2 missense variants that were deleterious in affected male relatives, four were symptomatic. We also compared clinical phenotypes with previously published cases of both sexes and provide an overview on 48 males and 57 females from 42 families. The spectrum of ZC4H2 defects comprises novel and recurrent mostly inherited missense variants in affected males, and de novo splicing, frameshift, nonsense, and partial ZC4H2 deletions in affected females. Pathogenicity of two newly identified missense variants was further supported by studies in zebrafish. We propose ZC4H2 as a good candidate for early genetic testing of males and females with a clinical suspicion of fetal hypo-/akinesia and/or (neurogenic) AMC.
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http://dx.doi.org/10.1002/humu.23841DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6874899PMC
December 2019

The impact of descriptive norms on motivation to participate in cancer screening - Evidence from online experiments.

Patient Educ Couns 2019 09 4;102(9):1621-1628. Epub 2019 Apr 4.

University College London, ResearchDepartment of Behavioural Science and Health, 1-19 Torrington Place, WC1E 6BT, London, UK.

Objective: The current study tested in two online experiments whether manipulating normative beliefs about cancer screening uptake increases intention to attend colorectal screening among previously disinclined individuals.

Methods: 2461 men and women from an Internet panel (Experiment 1 N = 1032; Experiment 2, N = 1423) who initially stated that they did not intend to take up screening were asked to guess how many men and women they believe to get screened for colorectal cancer. Across participants, we varied the presence/absence of feedback on the participant's estimate, as well as the stated proportion of men and women doing the screening test.

Results: Across the two experiments, we found that receiving one of the experimental messages stating that uptake is higher than estimated significantly increased the proportion of disinclined men and women becoming intenders. While, we found a positive relationship between the communicated uptake and screening intentions, we did not find evidence that providing feedback on the estimate has an added benefit.

Conclusion: Screening intention can be effectively manipulated through a high uptake message.

Practice Implications: Communication of high screening uptake is an easy and effective way to motivate disinclined individuals to engage in colorectal cancer screening.
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http://dx.doi.org/10.1016/j.pec.2019.04.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6686210PMC
September 2019

Using specialist screening practitioners (SSPs) to increase uptake of bowel scope (flexible sigmoidoscopy) screening: results of a feasibility single-stage phase II randomised trial.

BMJ Open 2019 02 15;9(2):e023801. Epub 2019 Feb 15.

Research Department of Behavioural Science and Health, University College London, London, UK.

Objective: To determine the feasibility of specialist screening practitioners (SSPs) offering patient navigation (PN) to facilitate uptake of bowel scope screening (BSS) among patients who do not confirm or attend their appointment.

Design: A single-stage phase II trial.

Setting: South Tyneside District Hospital, Tyne and Wear, England, UK.

Participants: Individuals invited for BSS at South Tyneside District Hospital during the 6-month recruitment period were invited to participate in the study.

Intervention: Consenting individuals were randomly assigned to either the PN intervention or usual care group in a 4:1 ratio. The intervention involved BSS non-attenders receiving a phone call from an SSP to elicit their reasons for non-attendance and offer educational, practical and emotional support as required. If requested by the patient, another BSS appointment was then scheduled.

Primary Outcome Measure: The number of non-attenders in the intervention group who were navigated and then rebooked and attended their new BSS appointment.

Secondary Outcome Measures: Barriers to BSS attendance, patient-reported outcomes including informed choice and satisfaction with BSS and the PN intervention, reasons for study non-participation, SSPs' evaluation of the PN process and a cost analysis.

Results: Of those invited to take part (n=1050), 152 (14.5%) were randomised into the study: PN intervention=109; usual care=43. Most participants attended their BSS appointment (PN: 79.8%; control: 79.1%) leaving 22 eligible for PN: only two were successfully contacted. SSPs were confident in delivering PN, but were concerned that low BSS awareness and information overload may have deterred patients from taking part in the study. Difficulty contacting patients was reported as a burden to their workload.

Conclusions: PN, as implemented, was not a feasible intervention to increase BSS uptake in South Tyneside. Interventions to increase BSS awareness may be better suited to this population.

Trial Registration Number: ISRCTN13314752; Results.
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http://dx.doi.org/10.1136/bmjopen-2018-023801DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398706PMC
February 2019

Correction: A new microdeletion syndrome involving TBC1D24, ATP6V0C, and PDPK1 causes epilepsy, microcephaly, and developmental delay.

Genet Med 2019 Sep;21(9):2159-2160

Department of Pediatrics, Université de Montréal, Montreal, QC, Canada.

The original version of this Article contained an error in the spelling of the author Siddharth Banka, which was incorrectly given as Siddhart Banka. This has now been corrected in both the PDF and HTML versions of the Article.
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http://dx.doi.org/10.1038/s41436-018-0413-xDOI Listing
September 2019

Rapid review of factors associated with flexible sigmoidoscopy screening use.

Prev Med 2019 03 28;120:8-18. Epub 2018 Dec 28.

Research Department of Behavioural Science and Health, University College London, London, UK.

Flexible sigmoidoscopy (FS) screening has been shown to reduce colorectal cancer (CRC) incidence and mortality among screened adults. The aim of this review was to identify patient-related factors associated with the screening test's use. We searched PubMed for studies that examined the association between FS screening use and one or more factors. To determine the eligibility of studies, we first reviewed titles, then abstracts, and finally the full paper. We started with a narrow search, which we expanded successively (by adding 'OR' terms) until the number of new publications eligible after abstract review was <1% of the total number of publications. We then abstracted factors from eligible papers and reported the number of times each was found to be positively or negatively associated with FS screening use. We identified 42 papers, most of which reported studies conducted in the United States of America (n = 21, 50%) and the United Kingdom (n = 13, 31%). Across studies, a wide range of factors were examined (n = 123), almost half of which were found to be associated with FS screening use at least once (n = 60). Sociodemographic and health and lifestyle factors that were frequently positively associated with FS screening use included: male gender, higher socioeconomic status and a family history of CRC. Frequently positively associated psychosocial factors included low perceived barriers and high perceived benefits. Findings suggest that future research should focus on developing a theoretical framework of cancer screening behaviour to allow a greater level of consistency and specificity in measuring key constructs.
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http://dx.doi.org/10.1016/j.ypmed.2018.12.018DOI Listing
March 2019

Testing active choice for screening practitioner's gender in endoscopy among disinclined women: An online experiment.

J Med Screen 2019 06 14;26(2):98-103. Epub 2018 Nov 14.

Research Department of Behavioural Science and Health, University College London, London, UK.

Objectives: A large proportion of women have a preference for a same-gender endoscopy practitioner. We tested how information about practitioner gender affected intention to have bowel scope screening in a sample of women disinclined to have the test.

Methods: In an online experimental survey, women aged 35-54 living in England who did not intend to participate in bowel scope screening (N = 1060) were randomised to one of four experimental conditions: (1) control (practitioner's gender is unknown), (2) opposite-gender (male practitioner by default), (3) same gender (female practitioner by default), and (4) active choice (the patient could choose the gender of the practitioner). Intention was measured following the interventions.

Results: Of 1010 (95.3%) women who completed the survey, most were White-British (83.6%), and working (63.3%). Compared with control, both active choice and same-gender conditions increased intention among disinclined women (9.3% vs. 16.0% and 17.9%; OR: 1.85; 95% CI: 1.07-3.20 and OR: 2.07; 95% CI: 1.23-3.50). There were no differences in intention between the opposite-gender and control conditions (9.8% vs. 9.3%; OR: 1.06; 95% CI: 0.60-1.90) or the active choice and same-gender conditions (16.0% vs. 17.9%: OR: 0.89; 95% CI: 0.55-1.46, using same gender as baseline).

Conclusions: Offering disinclined women a same-gender practitioner, either by choice or default, increased subsequent intention, while an opposite gender default did not negatively affect intention. Reducing uncertainty about gender of practitioner could positively affect uptake in women, and should be tested in a randomised controlled trial.
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http://dx.doi.org/10.1177/0969141318806322DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6484820PMC
June 2019

Use of Two Self-referral Reminders and a Theory-Based Leaflet to Increase the Uptake of Flexible Sigmoidoscopy in the English Bowel Scope Screening Program: Results From a Randomized Controlled Trial in London.

Ann Behav Med 2018 10;52(11):941-951

Research Department of Behavioural Science and Health, University College London, London, UK.

Background: We previously initiated a randomized controlled trial to test the effectiveness of two self-referral reminders and a theory-based leaflet (sent 12 and 24 months after the initial invitation) to increase participation within the English Bowel Scope Screening program.

Purpose: This study reports the results following the second reminder.

Methods: Men and women included in the initial sample (n = 1,383) were re-assessed for eligibility 24 months after their invitation (12 months after the first reminder) and excluded if they had attended screening, moved away, or died. Eligible adults received the same treatment they were allocated 12 months previous, that is, no reminder ("control"), or a self-referral reminder with either the standard information booklet ("Reminder and Standard Information Booklet") or theory-based leaflet designed using the Behavior Change Wheel ("Reminder and Theory-Based Leaflet"). The primary outcome was the proportion screened within each group 12 weeks after the second reminder.

Results: In total, 1,218 (88.1%) individuals were eligible. Additional uptake following the second reminder was 0.4% (2/460), 4.8% (19/399), and 7.9% (29/366) in the control, Reminder and Standard Information Booklet, and Reminder and Theory-Based Leaflet groups, respectively. When combined with the first reminder, the overall uptake for each group was 0.7% (3/461), 14.5% (67/461), and 21.5% (99/461). Overall uptake was significantly higher in the Reminder and Standard Information Booklet and Reminder and Theory-Based Leaflet groups than in the control (odds ratio [OR] = 26.1, 95% confidence interval [CI] = 8.1-84.0, p < .001 and OR = 46.9, 95% CI = 14.7-149.9, p < .001, respectively), and significantly higher in the Reminder and Theory-Based Leaflet group than in the Reminder and Standard Information Booklet group (OR = 1.8, 95% CI = 1.3-2.6, p < .001).

Conclusion: A second reminder increased uptake among former nonparticipants. The added value of the theory-based leaflet highlights a potential benefit to reviewing the current information booklet.

Trials Registry Number: ISRCTN44293755.
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http://dx.doi.org/10.1093/abm/kax068DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6196365PMC
October 2018

Barriers to bowel scope (flexible sigmoidoscopy) screening: a comparison of non-responders, active decliners and non-attenders.

BMC Public Health 2018 Oct 5;18(1):1161. Epub 2018 Oct 5.

Research Department of Behavioural Science and Health, University College London, Gower Street, London, WC1E 6BT, UK.

Background: Participation in bowel scope screening (BSS) is low (43%), limiting its potential to reduce colorectal cancer (CRC) incidence and mortality. This study aimed to quantify the prevalence of barriers to BSS and examine the extent to which these barriers differed according to non-participant profiles: non-responders to the BSS invitation, active decliners of the invitation, and non-attenders of confirmed appointments.

Methods: Individuals invited for BSS between March 2013 and December 2015, across 28 General Practices in England, were sent a questionnaire. Questions measured initial interest in BSS, engagement with the information booklet, BSS participation, and, where applicable, reasons for BSS non-attendance. Chi-square tests of independence were performed to examine the relationship between barriers, non-participant groups and socio-demographic variables.

Results: 1478 (45.8%) questionnaires were returned for analysis: 1230 (83.2%) attended screening, 114 (7.7%) were non-responders to the BSS invitation, 100 (6.8%) were active decliners, and 34 (2.3%) were non-attenders. Non-responders were less likely to have read the whole information booklet than active decliners (x (2, N = 157) = 7.00, p = 0.008) and non-attenders (x (2, N = 101) = 8.07, p = 0.005). Non-responders also had lower initial interest in having BSS than either active decliners (x (2, N = 213) = 6.07, p = 0.014) or non-attenders (x (2, N = 146) = 32.93, p < 0.001). Overall, anticipated pain (33%) and embarrassment (30%) were the most commonly cited barriers to BSS participation. For non-attenders, however, practical, appointment-related reasons were most common (27%).

Conclusions: Interventions to improve BSS uptake should be more nuanced and use targeted strategies to address the specific needs of each group.
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http://dx.doi.org/10.1186/s12889-018-6071-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6173878PMC
October 2018

A new microdeletion syndrome involving TBC1D24, ATP6V0C, and PDPK1 causes epilepsy, microcephaly, and developmental delay.

Genet Med 2019 05 24;21(5):1058-1064. Epub 2018 Sep 24.

Department of Pediatrics, Université de Montréal, Montreal, QC, Canada.

Purpose: Contiguous gene deletions are known to cause several neurodevelopmental syndromes, many of which are caused by recurrent events on chromosome 16. However, chromosomal microarray studies (CMA) still yield copy-number variants (CNVs) of unknown clinical significance. We sought to characterize eight individuals with overlapping 205-kb to 504-kb 16p13.3 microdeletions that are distinct from previously published deletion syndromes.

Methods: Clinical information on the patients and bioinformatic scores for the deleted genes were analyzed.

Results: All individuals in our cohort displayed developmental delay, intellectual disability, and various forms of seizures. Six individuals were microcephalic and two had strabismus. The deletion was absent in all 13 parents who were available for testing. The area of overlap encompasses seven genes including TBC1D24, ATP6V0C, and PDPK1 (also known as PDK1). Bi-allelic TBC1D24 pathogenic variants are known to cause nonsyndromic deafness, epileptic disorders, or DOORS syndrome (deafness, onychodystrophy, osteodystrophy, mental retardation, seizures). Sanger sequencing of the nondeleted TBC1D24 allele did not yield any additional pathogenic variants.

Conclusions: We propose that 16p13.3 microdeletions resulting in simultaneous haploinsufficiencies of TBC1D24, ATP6V0C, and PDPK1 cause a novel rare contiguous gene deletion syndrome of microcephaly, developmental delay, intellectual disability, and epilepsy.
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http://dx.doi.org/10.1038/s41436-018-0290-3DOI Listing
May 2019

Uptake of the English Bowel (Colorectal) Cancer Screening Programme: an update 5 years after the full roll-out.

Eur J Cancer 2018 11 7;103:267-273. Epub 2018 Sep 7.

Research Department of Behavioural Science and Health, University College London, UK. Electronic address:

Background: The initial roll-out of the English Bowel (Colorectal) Cancer Screening programme, during 2006 and 2009, found uptake to be low (54%) and socially graded. The current analysis used data from 2010 to 2015 to test whether uptake is increasing and becoming less socially graded over time.

Methods: Postcode-derived area-level uptake of 4.4 million first-time invitees, stratified by gender and the year of the first invitation (2010-2015), was generated using the National Bowel Cancer Screening System. Data were limited to people aged 60-64 years. Binomial regression tested for variations in uptake by the year of invitation, gender, region, area-based socio-economic deprivation and area-based ethnic diversity.

Results: Overall, the first-time colorectal cancer (CRC) screening uptake across 6 years was 52% (n = 2,285,996/4,423,734) with a decline between 2010 and 2015 (53%, 54%, 52%, 50%, 49%, 49% respectively). Uptake continued to be socially graded between the most and the least deprived area-level socio-economic deprivation quintiles (43% vs 57%), the most and the least area-based ethnic diversity quintiles (41% vs 56%) and men and women (47% vs 56%). Multivariate analysis demonstrated the effects of year, deprivation, ethnicity and gender on uptake. The effect of deprivation was more pronounced in the most deprived area quintile between men and women (40% vs 47%) than the least deprived area quintile (52% vs 62% respectively).

Conclusion: We did not find evidence of change in uptake patterns in CRC screening since its initial launch 10 years ago. The programme is unlikely to realise its full public health benefits and is en route to widening inequalities in CRC outcomes.
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http://dx.doi.org/10.1016/j.ejca.2018.07.135DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6202675PMC
November 2018

Using primary care-based paper and telephone interventions to increase uptake of bowel scope screening in Yorkshire: a protocol of a randomised controlled trial.

BMJ Open 2018 07 28;8(7):e024616. Epub 2018 Jul 28.

Research Department of Behavioural Science and Health, University College London, London, UK.

Introduction: Evidence suggests bowel scope screening (BSS) can significantly reduce an individual's risk of developing colorectal cancer (CRC). BSS for 55 year olds was therefore introduced to the English Bowel Cancer Screening Programme (BCSP) in 2013. However, the benefits are only gained from test completion and uptake is low (43%). Primary care involvement has consistently shown benefits to cancer screening uptake and so this study aims to build on this knowledge and evaluate general practitioner (GP) practice led interventions designed to increase BSS attendance.

Methods And Analysis: A three-arm randomised controlled trial will be conducted to evaluate three interventions: one intervention for prospective BSS invitees (primer letter with locally tailored leaflet sent by an individual's GP practice) and two interventions for those who do not attend their BSS appointment (a self-referral letter sent by an individual's GP practice and a patient navigation call made on behalf of an individual's GP practice). The trial will be set in Yorkshire. Individuals soon to receive their invitation to attend BSS at one of the Hull and East Yorkshire Bowel Cancer Screening centre sites, will be randomly assigned to one of three groups: control (usual care; no input from GP practice), Intervention group A (primer letter/leaflet and a self-referral letter), Intervention group B (primer letter/leaflet and a patient navigation call). Attendance data will be obtained from the BCSP database (via National Health Service (NHS) Digital) 3 months after the last intervention. Regression analysis will compare uptake, and additional clinical outcomes, across the three groups. The analysis will be multivariate and adjust for several covariates including gender and area-level deprivation.

Ethics And Dissemination: NHS ethical approval has been obtained from London-Harrow Research Ethics Committee. The results will be submitted for publication in a peer-reviewed journal and presented at conferences.

Trial Registration Number: ISRCTN16252122; Pre-results.
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http://dx.doi.org/10.1136/bmjopen-2018-024616DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6067356PMC
July 2018

Persuasion, Adaptation, and Double Identity: Qualitative Study on the Psychological Impact of a Screen-Detected Colorectal Cancer Diagnosis.

Gastroenterol Res Pract 2018 7;2018:1275329. Epub 2018 Jun 7.

Department of Applied Health Research, University College London, London WC1E 6BT, UK.

The NHS Bowel Cancer Screening Programme (BCSP) is aimed at reducing colorectal cancer (CRC) mortality through early detection within a healthy population. This study explores how 5 people (three females) experience and make sense of their screen-detected diagnosis and the psychological implications of this diagnostic pathway. A biographical narrative interview method was used, and transcripts were analysed using a thematic analysis with a phenomenological lens. Themes specifically relating to posttreatment experience and reflections are reported here: Do it: being living proof, Resisting the threat of recurrence, Rationalising bodily change, and Continuing life-"carrying on normally." Participants described their gratefulness to the BCSP, motivating a strong desire to persuade others to be screened. Furthermore, participants professed a duality of experience categorised by the normalisation of life after diagnosis and treatment and an identification of strength post cancer, as well as a difficulty adjusting to the new changes in life and a contrasting identity of frailty. Understanding both the long- and short-term impacts of a CRC diagnosis through screening is instrumental to the optimisation of support for patients. The results perhaps highlight a particular target for psychological distress reduction, which could reduce the direct and indirect cost of cancer to the patient.
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http://dx.doi.org/10.1155/2018/1275329DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6011067PMC
June 2018

Seizures in 3-month-old infant when placed on stomach.

J Paediatr Child Health 2018 11 20;54(11):1262-1263. Epub 2018 Jun 20.

SA Clinical Genetics, Women's and Children's Hospital, Adelaide, South Australia, Australia.

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http://dx.doi.org/10.1111/jpc.14082DOI Listing
November 2018

High Yield of Pathogenic Germline Mutations Causative or Likely Causative of the Cancer Phenotype in Selected Children with Cancer.

Clin Cancer Res 2018 04 19;24(7):1594-1603. Epub 2018 Jan 19.

Department of Human Genetics, Radboud University Medical Center, Nijmegen, the Netherlands.

In many children with cancer and characteristics suggestive of a genetic predisposition syndrome, the genetic cause is still unknown. We studied the yield of pathogenic mutations by applying whole-exome sequencing on a selected cohort of children with cancer. To identify mutations in known and novel cancer-predisposing genes, we performed trio-based whole-exome sequencing on germline DNA of 40 selected children and their parents. These children were diagnosed with cancer and had at least one of the following features: (1) intellectual disability and/or congenital anomalies, (2) multiple malignancies, (3) family history of cancer, or (4) an adult type of cancer. We first analyzed the sequence data for germline mutations in 146 known cancer-predisposing genes. If no causative mutation was found, the analysis was extended to the whole exome. Four patients carried causative mutations in a known cancer-predisposing gene: and ( = 3). In another 4 patients, exome sequencing revealed mutations causing syndromes that might have contributed to the malignancy (-based Rubinstein-Taybi syndrome, -based Coffin-Siris syndrome, -based Baraitser-Winter syndrome, and -based Weaver syndrome). In addition, we identified two genes, and , which are possibly involved in genetic cancer predisposition. In our selected cohort of patients, pathogenic germline mutations causative or likely causative of the cancer phenotype were found in 8 patients, and two possible novel cancer-predisposing genes were identified. Therewith, our study shows the added value of sequencing beyond a cancer gene panel in selected patients, to recognize childhood cancer predisposition. .
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http://dx.doi.org/10.1158/1078-0432.CCR-17-1725DOI Listing
April 2018

Reducing the socioeconomic gradient in uptake of the NHS bowel cancer screening Programme using a simplified supplementary information leaflet: a cluster-randomised trial.

BMC Cancer 2017 Aug 14;17(1):543. Epub 2017 Aug 14.

Department of Behavioural Science and Health, University College London, London, WC1E 7HB, UK.

Background: Uptake of colorectal cancer screening is low in the English NHS Bowel Cancer Screening Programme (BCSP). Participation in screening is strongly associated with socioeconomic status. The aim of this study was to determine whether a supplementary leaflet providing the 'gist' of guaiac-based Faecal Occult Blood test (gFOBt) screening for colorectal cancer could reduce the socioeconomic status (SES) gradient in uptake in the English NHS BCSP.

Methods: The trial was integrated within routine BCSP operations in November 2012. Using a cluster randomised controlled design all adults aged 59-74 years who were being routinely invited to complete the gFOBt were randomised based on day of invitation. The Index of Multiple Deprivation was used to create SES quintiles. The control group received the standard information booklet ('SI'). The intervention group received the SI booklet and the Gist leaflet ('SI + Gist') which had been designed to help people with lower literacy engage with the invitation. Blinding of hubs was not possible and invited subjects were not made aware of a comparator condition. The primary outcome was the gradient in uptake across IMD quintiles.

Results: In November 2012, 163,525 individuals were allocated to either the 'SI' intervention (n = 79,104) or the 'SI + Gist' group (n = 84,421). Overall uptake was similar between the intervention and control groups (SI: 57.3% and SI + Gist: 57.6%; OR = 1.02, 95% CI: 0.92-1.13, p = 0.77). Uptake was 42.0% (SI) vs. 43.0% (SI + Gist) in the most deprived quintile and 65.6% vs. 65.8% in the least deprived quintile (interaction p = 0.48). The SES gradient in uptake was similar between the study groups within age, gender, hub and screening round sub-groups.

Conclusions: Providing supplementary simplified information in addition to the standard information booklet did not reduce the SES gradient in uptake in the NHS BCSP. The effectiveness of the Gist leaflet when used alone should be explored in future research.

Trial Registration: ISRCTN74121020 , registered: 17/20/2012.
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http://dx.doi.org/10.1186/s12885-017-3512-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5556676PMC
August 2017

Improving uptake of flexible sigmoidoscopy screening: a randomized trial of nonparticipant reminders in the English Screening Programme.

Endoscopy 2017 Jan 20;49(1):35-43. Epub 2016 Dec 20.

Health Behaviour Research Centre, Department of Epidemiology and Public Health, University College London, London, United Kingdom.

 Uptake of flexible sigmoidoscopy screening in the English Bowel Scope Screening (BSS) Programme is low. The aim of this study was to test the impact of a nonparticipant reminder and theory-based leaflet to promote uptake among former nonresponders (previously did not confirm their appointment) and nonattenders (previously confirmed their appointment but did not attend).  Eligible adults were men and women in London who had not attended a BSS appointment within 12 months of their invitation. Individuals were randomized (1:1:1) to receive no reminder (control), a 12-month reminder plus standard information booklet (TMR-SIB), or a 12-month reminder plus bespoke theory-based leaflet (TMR-TBL) designed to address barriers to screening. The primary outcome of the study was the proportion of individuals screened within each group 12 weeks after the delivery of the reminder.  A total of 1383 men and women were randomized and analyzed as allocated (n = 461 per trial arm). Uptake was 0.2 % (n = 1), 10.4 % (n = 48), and 15.2 % (n = 70) in the control, TMR-SIB, and TMR-TBL groups, respectively. Individuals in the TMR-SIB and TMR-TBL groups were significantly more likely to attend screening than individuals in the control group (adjusted odds ratio [OR] 53.7, 95 % confidence interval [CI] 7.4 - 391.4,  < 0.001 and OR 89.0, 95 %CIs 12.3 - 645.4,  < 0.01, respectively). Individuals in the TMR-TBL group were also significantly more likely to attend screening than individuals in the TMR-SIB group (OR 1.7, 95 %CIs 1.1 - 2.5,  = 0.01). Across all groups, former nonattenders were more likely to participate in screening than former nonresponders (uptake was 14.2 % and 8.0 %, respectively; OR 2.5, 95 %CIs 1.4 - 4.4,  < 0.01). The adenoma detection rate among screened adults was 7.6 %, which is comparable to the rate in initial attenders.  Reminders targeting former nonparticipants can improve uptake and are effective for both former nonresponders and nonattenders. Theory-based information designed to target barriers to screening added significantly to this strategy.
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http://dx.doi.org/10.1055/s-0042-118452DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6193284PMC
January 2017

Using Specialist Screening Practitioners (SSPs) to increase uptake of the Bowel Scope (Flexible Sigmoidoscopy) Screening Programme: a study protocol for a feasibility single-stage phase II trial.

Pilot Feasibility Stud 2016 14;2:54. Epub 2016 Sep 14.

Cancer Research UK Health Behaviour Research Centre, Department of Epidemiology and Public Health, University College London, London, WC1E 6BT UK.

Background: The NHS Bowel Scope Screening (BSS) programme offers men and women aged 55 years a once-only flexible sigmoidoscopy (FS), a test that can help reduce colorectal cancer (CRC) incidence and mortality. However, the benefits of BSS are contingent on uptake. This National Institute for Health Research-funded single-stage phase II trial will test the feasibility of using patient navigation (PN), an intervention that offers support to patients to overcome barriers to healthcare, to increase BSS uptake within a socially deprived area of England.

Methods/design: All individuals invited for BSS at South Tyneside NHS Foundation Trust during the 6-month recruitment period will be invited to take part in the study. Consenting participants will be randomised to receive PN or usual care in a 2:1 ratio. PN involves non-attenders receiving a phone call from a Specialist Screening Practitioner (SSP) who will elicit reasons for non-attendance and offer educational, practical, and emotional support as needed. If requested by the patient, another appointment for BSS will then be arranged. We anticipate 30 % of participants will be non-attenders. Using A'Hern single-stage design, with 20 % significance level and 80 % power, at least 35 participants who receive PN need to subsequently attend for PN to be considered worthy of further investigation in a definitive trial. The primary outcome measure will be the number of participants in the PN group who re-book and attend their BSS appointment. A qualitative analysis of the PN transcripts, and interviews with the SSPs, will also be conducted, alongside a quantitative analysis of completed patient-reported experience questionnaires. An economic analysis will calculate the costs of delivering PN.

Discussion: This feasibility study will be instrumental in deciding whether to conduct the first definitive trial of PN in BSS in England. If PN is subsequently shown to be cost-effective at increasing uptake of BSS, NHS policies could be modified to implement PN as a standard service. The results will be disseminated in peer-reviewed journals and at scientific conferences.

Trial Registration: International Standard Randomised Controlled Trial Number, ISRCTN13314752.
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http://dx.doi.org/10.1186/s40814-016-0093-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5153869PMC
September 2016

A national cluster-randomised controlled trial to examine the effect of enhanced reminders on the socioeconomic gradient in uptake in bowel cancer screening.

Br J Cancer 2016 Dec 22;115(12):1479-1486. Epub 2016 Nov 22.

Centre for Cancer Prevention, Wolfson Institute of Preventive Medicine, Queen Mary University of London, London EC1M 6BQ, UK.

Background: The NHS Bowel Cancer Screening Programme in England offers biennial guaiac faecal occult blood testing (gFOBt). There is a socioeconomic gradient in participation and socioeconomically disadvantaged groups have worse colorectal cancer survival than more advantaged groups. We compared the effectiveness and cost of an enhanced reminder letter with the usual reminder letter on overall uptake of gFOBt and the socioeconomic gradient in uptake.

Methods: We enhanced the usual reminder by including a heading 'A reminder to you' and a short paragraph restating the offer of screening in simple language. We undertook a cluster-randomised trial of all 168 480 individuals who were due to receive a reminder over 20 days in 2013. Randomisation was based on the day of invitation. Blinding of individuals was not possible, but the possibility of bias was minimal owing to the lack of direct contact with participants. The enhanced reminder was sent to 78 067 individuals and 90 413 received the usual reminder. The primary outcome was the proportion of people adequately screened and its variation by quintile of Index of Multiple Deprivation. Data were analysed by logistic regression with conservative variance estimates to take account of cluster randomisation.

Results: There was a small but statistically significant (P=0.001) increase in participation with the enhanced reminder (25.8% vs 25.1%). There was significant (P=0.005) heterogeneity of the effect by socioeconomic status with an 11% increase in the odds of participation in the most deprived quintile (from 13.3 to 14.1%) and no increase in the least deprived. We estimated that implementing the enhanced reminder nationally could result in up to 80 more people with high or intermediate risk colorectal adenomas and up to 30 more cancers detected each year if it were implemented nationally. The intervention incurred a small one-off cost of £78 000 to modify the reminder letter.

Conclusions: The enhanced reminder increases overall uptake and reduces the socioeconomic gradient in bowel cancer screening participation at little additional cost.
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http://dx.doi.org/10.1038/bjc.2016.365DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5155361PMC
December 2016

What do people fear about cancer? A systematic review and meta-synthesis of cancer fears in the general population.

Psychooncology 2017 08 6;26(8):1070-1079. Epub 2016 Oct 6.

Department of Applied Health Research, UCL, London, UK.

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.
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http://dx.doi.org/10.1002/pon.4287DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573953PMC
August 2017