Who will use pre-exposure prophylaxis (PrEP) and why?: Understanding PrEP awareness and acceptability amongst men who have sex with men in the UK – a mixed methods study

Background: Recent clinical trials suggest that pre-exposure prophylaxis (PrEP) may reduce HIV transmission by up to 86% for men who have sex with men (MSM), whilst relatively high levels of PrEP acceptability have been reported to date. This study examines PrEP awareness amongst sub-groups of MSM communities and acceptability amongst MSM in a low prevalence region (Scotland, UK), using a mixed methods design. Methods: Quantitative surveys of n = 690 MSM recruited online via social and sociosexual media were analysed using descriptive statistics and multivariate logistic regression. In addition, n = 10 in-depth qualitative interviews with MSM were analysed thematically. Results: Under one third (29.7%) of MSM had heard of PrEP, with awareness related to living in large cities, degree level education, commercial gay scene use and reporting an HIV test in the last year. Just under half of participants (47.8%) were likely to use PrEP if it were available but there was no relationship between PrEP acceptability and previous PrEP awareness. Younger men (18–25 years) and those who report higher risk UAI were significantly more likely to say they would use PrEP. Qualitative data described specific PrEP scenarios, illustrating how risk, patterns of sexual practice and social relationships could affect motivation for and nature of PrEP use. Conclusion: These findings suggest substantial interest PrEP amongst MSM reporting HIV risk behaviours in Scotland. Given the Proud results, there is a strong case to investigate PrEP implementation within the UK. However, it appears that disparities in awareness have already emerged along traditional indicators of inequality. Our research identifies the need for comprehensive support when PrEP is introduced, including a key online component, to ensure equity of awareness across diverse MSM communities (e.g. by geography, education, gay scene use and HIV proximity), as well as to responding to the diverse informational and sexual health needs of all MSM communities

How do online patient support communities affect the experience of inflammatory bowel disease?: an online survey

Objective: To explore how participation in an online support community may impact upon the experience of inflammatory bowel disease (IBD). Design: An online survey. Setting: Study participants recruited through 35 IBD online communities. Participants: A total of 249 males and females aged 16–69 years, living with either Crohn’s disease (65.9%) or ulcerative colitis (26.1%) or awaiting formal diagnosis (8%). Results: Patients reported being members for an average of two years, with the majority accessing the community on a daily (46.9%) or weekly (40%) basis. Spending on average four hours per week online, approximately two-thirds of members posted between one and five messages per week. Members joined to find others in a similar situation and to obtain and share information and emotional support. Through participation members accessed a wealth of knowledge about all aspects of living with IBD and this was helpful in terms of accepting their illness and learning to manage it. The community also helped members see their illness more positively as well as contributing to an improvement in subjective wellbeing. However, some negatives aspects were noted. Conclusions: Online support communities may provide a useful shared space through which IBD patients may seek and provide both informational and emotional support. Many of these benefits may not be available through traditional healthcare. Whilst online support communities may be beneficial for those who choose to participate in them, they are not without limitations. Health professionals should be aware of the potential benefits and limitations of online communities

Meaning behind measurement : self-comparisons affect responses to health related quality of life questionnaires

Purpose The subjective nature of quality of life is particularly pertinent to the domain of health-related quality of life (HRQOL) research. The extent to which participants’ responses are affected by subjective information and personal reference frames is unknown. This study investigated how an elderly population living with a chronic metabolic bone disorder evaluated self-reported quality of life. Methods Participants (n = 1,331) in a multi-centre randomised controlled trial for the treatment of Paget’s disease completed annual HRQOL questionnaires, including the SF-36, EQ-5D and HAQ. Supplementary questions were added to reveal implicit reference frames used when making HRQOL evaluations. Twenty-one participants (11 male, 10 female, aged 59–91 years) were interviewed retrospectively about their responses to the supplementary questions, using cognitive interviewing techniques and semi-structured topic guides. Results The interviews revealed that participants used complex and interconnected reference frames to promote response shift when making quality of life evaluations. The choice of reference frame often reflected external factors unrelated to individual health. Many participants also stated that they were unclear whether to report general or disease-related HRQOL. Conclusions It is important, especially in clinical trials, to provide instructions clarifying whether ‘quality of life’ refers to disease-related HRQOL. Information on selfcomparison reference frames is necessary for the interpretation of responses to questions about HRQOL.The Chief Scientist Office of the Scottish Government Health Directorates, The PRISM funding bodies (the Arthritis Research Campaign, the National Association for the Relief of Paget’s disease and the Alliance for Better Bone Health)Peer reviewedAuthor final versio

Experimentally manipulated self-affirmation promotes reduced alcohol consumption in response to narrative information

Background: Health-risk information is increasingly being conveyed through accounts of personal experiences or narrative information. However, whether self-affirmation can enhance the ability of such messages to promote behavior change has yet to be established. Purpose: This study aims to test whether self-affirmation (a) promotes behavior change following exposure to narrative information about the risks of excessive alcohol consumption and (b) boosts message acceptance by increasing narrative engagement. Methods: In an experimental design, female drinkers (N = 142) reported their baseline alcohol consumption and were randomly allocated to condition (Self-Affirmation, Control). All participants next watched an extract of a genuine narrative piece in which the central character discussed her liver disease and its link with her previous alcohol consumption. Then, participants completed measures assessing engagement with the narrative and message acceptance. The primary outcome was alcohol consumption, assessed at 7-day follow-up. Results: Self-affirmed participants reported consuming significantly less alcohol at follow-up compared to baseline (mean 7-day decrease = 5.43 units); there was no change in alcohol consumption for the control group. Immediately post-manipulation, self-affirmed participants (vs. control) showed more message acceptance and reported greater engagement with the information. The impact of self-affirmation on message acceptance was mediated by narrative engagement. Conclusions: Self-affirmation can promote behavior change following exposure to health information, even when presented in narrative form

Financial considerations in the conduct of multi-centre randomised controlled trials: evidence from a qualitative study.

National Coordinating Centre for Research Methodology; Medical Research Council, UK Department of Health; Chief Scientist OfficeNot peer reviewedPublisher PD

End of life care interventions for people with dementia in care homes : addressing uncertainty within a framework for service delivery and evaluation

© 2015 Goodman et al. Open Access. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise statedMethods: The data from three studies on EoL care in care homes: (i) EVIDEM EoL , (ii) EPOCH , and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months, Results: Across the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes. Conclusion: For people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settingsPeer reviewe

User-generated online health content: A survey of internet users in the United Kingdom

This is the final version. Available on open access from JMIR Publications via the DOI in this recordThe production of health information has begun to shift from commercial organizations to health care users themselves. People increasingly go online to share their own health and illness experiences and to access information others have posted, but this behavior has not been investigated at a population level in the United Kingdom. Objective: This study aims to explore access and production of user-generated health content among UK Internet users and to investigate relationships between frequency of use and other variables. Methods: We undertook an online survey of 1000 UK Internet users. Descriptive and multivariate statistical analyses were used to interpret the data. Results: Nearly one-quarter of respondents (23.7%, 237/1000) reported accessing and sharing user-generated health content online, whereas more than 20% (22.2%, 222/1000) were unaware that it was possible to do this. Respondents could be divided into 3 groups based on frequency of use: rare users (78.7%, 612/778) who accessed and shared content less than weekly, users (13.9%, 108/778) who did so weekly, and superusers (7.5%, 58/778) who did so on a daily basis. Superusers were more likely to be male (P<.001) and to be employed (P<.001), but there were no differences between the groups with respect to educational level (P=.99) or health status (P=.63). They were more likely to use the Internet for varied purposes such as banking and shopping (P<.001). Conclusions: Although this study found reasonably widespread access of user-generated online health content, only a minority of respondents reported doing so frequently. As this type of content proliferates, superusers are likely to shape the health information that others access. Further research should assess the effect of user-generated online content on health outcomes and use of health services by Internet users. © Martin Duracinsky, Christophe Lalanne, Cécile Goujard, Susan Herrmann, Christian Cheung-Lung, Jean-Paul Brosseau, Yannick Schwartz, Olivier Chassany.Institute for Prospective Technological Studies (IPTS)European Commission’s Joint Research Centre (JRC)European Commission Directorate General for Communications Networks, Content and Technology (DG Connect

The face of equipoise - delivering a structured education programme within a randomized controlled trial: qualitative study

Background: In trials of behavioural interventions, the individuals who deliver the intervention are in a position of key influence on the success of the trial. Their fidelity to the intervention is crucial. Yet little is understood about the experiences of this group of trial personnel. This study aimed to investigate the views and experiences of educators who delivered a structured education intervention to people with type 2 diabetes, which incorporated training in self-monitoring of either blood glucose (SMBG) or urine glucose (SMUG) as part of a randomized controlled trial (RCT). Methods: Educators’ views were explored through focus groups before and after training (N = 18) and approximately 1 year into the trial (N = 14), and semi-structured telephone interviews at approximately 2 years (N = 7). Analysis was based on the constant comparative method. Results: Educators held preferences regarding the intervention variants; thus, they were not in individual equipoise. Training raised awareness of preferences and their potential to impact on delivery. Educators were confident in their unbiased delivery, but acknowledged the challenges involved. Concealing their preferences was helped by a sense of professionalism, the patient-centred nature of the intervention, and concessions in the trial protocol (enabling participants to swap monitoring methods if needed). Commitment to unbiased delivery was explained through a desire for evidence-based knowledge in the contentious area of SMBG. Conclusions: The findings provide insight into a previously unexplored group of trial personnel - intervention deliverers in trials of behavioural interventions - which will be useful to those designing and running similar trials. Rather than individual equipoise, it is intervention deliverers’ awareness of personal preferences and their potential impact on the trial outcome that facilitates unbiased delivery. Further, awareness of community equipoise, the need for evidence, and relevance to the individual enhance commitment to the RCT

A qualitative cross-country comparison of whether, when and how people diagnosed with lung cancer talk about cigarette smoking in narrative interviews

Objectives To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help seeking. Design A qualitative cross-country comparison with analysis of narrative interviews. Setting Participants in Sweden, Denmark and England were interviewed during 2015-2016. Interviews, using a narrative approach, were conducted in participants’ home by trained and experienced qualitative researchers. Participants Seventy two men and women diagnosed with lung cancer were interviewed within six months of their diagnosis. Results The English participants, regardless of their own smoking status, typically raised the topic of smoking early in their interviews. Smoking was mentioned in relation to symptom appraisal and interactions with others, including health professionals. Participants in all three countries interpreted their symptoms in relation to their smoking status, but in Sweden (unlike England) there was no suggestion that this deterred them from seeking care. English participants, but not Swedish or Danish, recounted reluctance to consult healthcare professionals with their symptoms while they were still smoking, some gave up shortly before consulting. Some English patients described defensive strategies to challenge stigma or pre-empt other people’s assumptions about their culpability for the disease. A quarter of the Danish and 40% of the Swedish participants did not raise the topic of smoking at any point in their interview. Conclusion The causal relationship between smoking and lung cancer is well-known in all three countries, yet this comparative analysis suggests that the links between a sense of responsibility, stigma and reluctance to consult is not inevitable. These findings help illuminate why English patients with lung cancer tend to be diagnosed at a later stage than their Swedish counterparts

An overview of self-administered health literacy instruments

This is the final version. Available from Public Library of Science via the DOI in this record.With the increasing recognition of health literacy as a worldwide research priority, the development and refinement of indices to measure the construct is an important area of inquiry. Furthermore, the proliferation of online resources and research means that there is a growing need for self-administered instruments. We undertook a systematic overview to identify all published self-administered health literacy assessment indices to report their content and considerations associated with their administration. A primary aim of this study was to assist those seeking to employ a self-reported health literacy index to select one that has been developed and validated for an appropriate context, as well as with desired administration characteristics. Systematic searches were carried out in four electronic databases, and studies were included if they reported the development and/or validation of a novel health literacy assessment measure. Data were systematically extracted on key characteristics of the instruments: breadth of construct ("generic" vs. "contentor context- specific" health literacy), whether it was an original instrument or a derivative, country of origin, administration characteristics, age of target population (adult vs. pediatric), and evidence for validity. 35 articles met the inclusion criteria. There were 27 original instruments (27/35; 77.1%) and 8 derivative instruments (8/35; 22.9%). 22 indices measured "general" health literacy (22/35; 62.9%) while the remainder measured condition- or context- specific health literacy (13/35; 37.1%). Most health literacy measures were developed in the United States (22/35; 62.9%), and about half had adequate face, content, and construct validity (16/35; 45.7%). Given the number of measures available for many specific conditions and contexts, and that several have acceptable validity, our findings suggest that the research agenda should shift towards the investigation and elaboration of health literacy as a construct itself, in order for research in health literacy measurement to progress.National Institute for Health Research (NIHR