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

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

Understanding low colorectal cancer screening uptake in South Asian faith communities in England - a qualitative study.

BACKGROUND: Colorectal cancer screening uptake within the South Asian population in England is approximately half that of the general population (33 % vs 61 %), and varies by Muslim (31.9 %), Sikh (34.6 %) and Hindu (43.7 %) faith background. This study sought to explore reasons for low uptake of CRC screening in South Asian communities and for the variability of low uptake between three faith communities; and to identify strategies by which uptake might be improved. METHODS: We interviewed 16 'key informants' representing communities from the three largest South Asian faith backgrounds (Islam, Hinduism and Sikhism) in London, England. RESULTS: Reasons for low colorectal cancer screening uptake were overwhelmingly shared across South Asian faith groups. These were: limitations posed by written English; limitations posed by any written language; reliance on younger family members; low awareness of colorectal cancer and screening; and difficulties associated with faeces. Non-written information delivered verbally and interactively within faith or community settings was preferred across faith communities. CONCLUSIONS: Efforts to increase accessibility to colorectal cancer screening in South Asian communities should use local language broadcasts on ethnic media and face-to-face approaches within community and faith settings to increase awareness of colorectal cancer and screening, and address challenges posed by written materials

Inequalities in cancer screening participation: examining differences in perceived benefits and barriers

Objective: Inequalities exist in colorectal cancer (CRC) screening uptake, with people from lower socioeconomic status backgrounds less likely to participate. Identifying the facilitators and barriers to screening uptake is important to addressing screening disparities. We pooled data from 2 trials to examine educational differences in psychological constructs related to guaiac fecal occult blood testing. Methods: Patients (n = 8576) registered at 7 general practices in England, within 15 years of the eligible age range for screening (45-59.5 years), were invited to complete a questionnaire. Measures included perceived barriers (emotional and practical) and benefits of screening, screening intentions, and participant characteristics including education. Results: After data pooling, 2181 responses were included. People with high school education or no formal education reported higher emotional and practical barriers and were less likely to definitely intend to participate in screening, compared with university graduates in analyses controlling for study arm and participant characteristics. The belief that one would worry more about CRC after screening and concerns about tempting fate were strongly negatively associated with education. In a model including education and participant characteristics, respondents with low emotional barriers, low practical barriers, and high perceived benefits were more likely to definitely intend to take part in screening. Conclusions: In this analysis of adults approaching the CRC screening age, there was a consistent effect of education on perceived barriers toward guaiac fecal occult blood testing, which could affect screening decision making. Interventions should target specific barriers to reduce educational disparities in screening uptake and avoid exacerbating inequalities in CRC mortality

Use of a twelve month's self referral reminder to faciliate uptake of bowel scope (flexible sigmoidoscopy screening) in previous non-responders: a London-based feasibility study

Background: In March 2013, NHS England extended its national Bowel Cancer Screening Programme to include ‘one-off’ Flexible Sigmoidoscopy screening (NHS Bowel Scope Screening, BSS) for men and women aged 55. With less than one in two people currently taking up the screening test offer, there is a strong public health mandate to develop system-friendly interventions to increase uptake while the programme is rolling out. This study aimed to assess the feasibility of sending a reminder to previous BSS non-responders, 12 months after the initial invitation, with consideration for its potential impact on uptake. Method: This study was conducted in the ethnically diverse London Boroughs of Brent and Harrow, where uptake is below the national average. Between September and November 2014, 160 previous non-responders were randomly selected to receive a reminder of the opportunity to self-refer 12 months after their initial invitation. The reminder included instructions on how to book an appointment, and provided options for the time and day of the appointment and the gender of the endoscopist performing the test. To address barriers to screening, the reminder was sent with a brief locally tailored information leaflet designed specifically for this study. Participants not responding within 4 weeks were sent a follow-up reminder, after which there was no further intervention. Self-referral rates were measured 8 weeks after the delivery of the follow-up reminder and accepted as final. Results: Of the 155 participants who received the 12 months’ reminder (returned to sender, n=5), 30 (19.4%) self-referred for an appointment, of which 24 (15.5%) attended and were successfully screened. Attendance rates differed by gender, with significantly more women attending an appointment than men (20.7% vs 8.8%, respectively; OR=2.73, 95% CI=1.02–7.35, P=0.05), but not by area (Brent vs Harrow) or area-level deprivation. Of the 30 people who self-referred for an appointment, 27 (90%) indicated a preference for a same-sex practitioner, whereas three (10%) gave no preference. Preference for a same-sex practitioner was higher among women than men (χ2=7.78, P<0.05), with only 67% of men (six of nine) requesting a same-sex practitioner, compared with 100% of women (n=21). Conclusions: Sending previous non-responders a 12 months’ reminder letter with a brief information leaflet is a feasible and efficacious intervention, which merits further investigation in a randomised controlled trial

The Newcastle ENDOPREM™: a validated patient reported experience measure for gastrointestinal endoscopy

OBJECTIVES: Measuring patient experience of gastrointestinal (GI) procedures is a key component of evaluation of quality of care. Current measures of patient experience within GI endoscopy are largely clinician derived and measured; however, these do not fully represent the experiences of patients themselves. It is important to measure the entirety of experience and not just experience directly during the procedure. We aimed to develop a patient-reported experience measure (PREM) for GI procedures. DESIGN: Phase 1: semi-structured interviews were conducted in patients who had recently undergone GI endoscopy or CT colonography (CTC) (included as a comparator). Thematic analysis identified the aspects of experience important to patients. Phase 2: a question bank was developed from phase 1 findings, and iteratively refined through rounds of cognitive interviews with patients who had undergone GI procedures, resulting in a pilot PREM. Phase 3: patients who had attended for GI endoscopy or CTC were invited to complete the PREM. Psychometric properties were investigated. Phase 4 involved item reduction and refinement. RESULTS: Phase 1: interviews with 35 patients identified six overarching themes: anxiety, expectations, information & communication, embarrassment & dignity, choice & control and comfort. Phase 2: cognitive interviews refined questionnaire items and response options. Phase 3: the PREM was distributed to 1650 patients with 799 completing (48%). Psychometric properties were found to be robust. Phase 4: final questionnaire refined including 54 questions assessing patient experience across five temporal procedural stages. CONCLUSION: This manuscript gives an overview of the development and validation of the Newcastle ENDOPREM™, which assesses all aspects of the GI procedure experience from the patient perspective. It may be used to measure patient experience in clinical care and, in research, to compare patients' experiences of different endoscopic interventions

UCL Qualitative health research symposium 2017: collaboration in qualitative health research

In recent years, there have been increasing calls for collaboration between academia and the wider healthcare community in health research. This is largely driven by efforts to engage the public in the “co-production” of evidence-based healthcare and healthcare decision-making, as well as penetrate borders between disciplines. As a result, traditional "lone researcher" models of qualitative health research have shifted to include research teams which are increasingly made up of qualitative researchers alongside quantitative researchers, members of the public, health professionals, policy-makers and other stakeholders. In these ways, health research is assumed to be more relevant, ethically justifiable, and broadly applicable. However, such collaborations may be complex and may create challenges. To date, there has been limited critical consideration of these challenges and little is known about the assumptions and effectiveness of these collaborations. We organised a one-day symposium to explore themes related to engagement, co-production and collaborative meaning making in qualitative health research. The oral presentations and posters used examples of collaborative studies to critically explore the processes used to carry out research as a diverse team. The discussions throughout the day alluded to the need to understand the multiple forms and levels of patient and public involvement in research, and distinguish between patient representatives and members of the public. Collaborative research requires flexibility, and might lead the researcher to occupy “mediating” roles such as that of the “cultural broker” or “boundary spanner”. The symposium created a forum to critically reflect on current approaches to inform improved ways of collaborating and engaging with diverse stakeholders to meaningfully impact on health and healthcare delivery. We should continue to search for ways to unpack the concept of “collaboration” to identify the purpose of collaborative relationships, the required activities and the actors involved

Use of two self-referral reminders and a theory-based leaflet to increase the uptake of flexible sigmoidoscopy in the English Bowel Scope Screening Programme: results from a randomised controlled trial in London

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

An international internet survey of the experiences of 1,714 mothers with a late stillbirth: The STARS cohort study

Background: Stillbirth occurring after 28 weeks gestation affects between 1.5-4.5 per 1,000 births in high-income countries. The majority of stillbirths in this setting occur in women without risk factors. In addition, many established risk factors such as nulliparity and maternal age are not amenable to modification during pregnancy. Identification of other risk factors which could be amenable to change in pregnancy should be a priority in stillbirth prevention research. Therefore, this study aimed to utilise an online survey asking women who had a stillbirth about their pregnancy in order to identify any common symptoms and experiences. Methods: A web-based survey. Results: A total of 1,714 women who had experienced a stillbirth >3 weeks prior to enrolment completed the survey. Common experiences identified were: perception of changes in fetal movement (63 % of respondents), reports of a "gut instinct" that something was wrong (68 %), and perceived time of death occurring overnight (56 %). A quarter of participants believed that their baby's death was due to a cord issue and another 18 % indicated that they did not know the reason why their baby died. In many cases (55 %) the mother believed the cause of death was different to that told by clinicians. Conclusions: This study confirms the association between altered fetal movements and stillbirth and highlights novel associations that merit closer scrutiny including a maternal gut instinct that something was wrong. The potential importance of maternal sleep is highlighted by the finding of more than half the mothers believing their baby died during the night. This study supports the importance of listening to mothers' concerns and symptoms during pregnancy and highlights the need for thorough investigation of stillbirth and appropriate explanation being given to parents

UCL qualitative health research symposium 2015: enriching qualitative inquiry in health

The field of health research appears increasingly open to qualitative approaches. We celebrate the rise in qualitative and mixed methods publications and the marked presence of qualitative researchers in academic centres of health research. However, we note enduring tensions between the conceptual and methodological approaches of qualitative research and those of a quantitative paradigm, generally more familiar to health practitioners, policymakers and often other researchers. In some instances, qualitatively-oriented investigations continue to conflict with the expectations within health research to provide concrete and timely findings and recommendations. These concerns foreground questions to be explored around the applicability, value, contribution, legitimacy and limitations of qualitative inquiry within the prevailing research culture. In recognition of these questions, we curated a day long symposium around abstracts submitted in response to an open, internationally disseminated call, framed to create a productive space for the critical examination of the current state of qualitative health research, and the exploration of ways to enable its enrichment. We organised the papers, posters, keynote address and panel discussion into three themes. The first, Problematising the research landscape, reflects on particular issues arising when we 'do' qualitative research. The second, Re-approaching familiar frameworks, explores the application of epistemological traditions of the social sciences to understand health, and to consider what underpins how we frame and treat such topics. The third, Imagination at work-enriching the potential, attends to the prospects of bringing new approaches into research, sometimes borrowed from other fields. The symposium facilitated engagement with current research and reflections on connecting methodological advances with theoretical traditions amidst challenges of carrying out applied health research. A perceived need exists for qualitative researchers to concertedly promote and enrich our contributions without homogenising or obscuring what our approach has to offer. This could be achieved through the continued development of a common platform for qualitative research that facilitates collaborations and fosters interdisciplinary education and training. This symposium represents critical steps towards these aims, to be further developed through the convening of future events

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

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