Communicating health decisions: an analysis of messages posted to online prostate cancer forums

Background  Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood. Objective  This paper explores the types of decision-making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision-making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model. Method  Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision-making processes coded. Results  Men looking online for information about treatment options for PCa are exposed to a range of decision-making processes. Just under half (49.6%) of the messages reported non-systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side-effects. Processes did not vary between the blogs and online forums. Discussion and conclusion  Compared to previous studies far fewer messages reported non-systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed

Viewing the body after bereavement due to a traumatic death: qualitative study in the UK

Objective Whether bereaved relatives should be encouraged to view the body after a traumatic death is uncertain. This analysis of narrative interviews interprets people’s accounts of why and how they decided whether to view the body and their emotional reactions to this, immediately and at a later stage

What do we need to consider when planning, implementing and researching the use of alternatives to face-to-face consultations in primary healthcare?

Objectives: Communications technologies are variably utilised in healthcare. Policymakers globally have espoused the potential benefits of alternatives to face-to-face consultations, but research is in its infancy. The aim of this essay is to provide thinking tools for policymakers, practitioners and researchers who are involved in planning, implementing and evaluating alternative forms of consultation in primary care. Methods: We draw on preparations for a focussed ethnographic study being conducted in eight general practice settings in the UK, knowledge of the literature, qualitative social science and Cochrane reviews. In this essay we consider different types of patients, and also reflect on how the work, practice and professional identities of different members of staff in primary care might be affected. Results: Elements of practice are inevitably lost when consultations are no longer face-to-face, and we know little about the impact on core aspects of the primary care relationship. Resistance to change is normal and concerns about the introduction of alternative methods of consultation are often expressed using proxy reasons; for example, concerns about patient safety. Any planning or research in the field of new technologies should be attuned to the potential for unintended consequences. Conclusions: Implementation of alternatives to the face-to-face consultation is more likely to succeed if approached as co-designed initiatives that start with the least controversial and most promising changes for the practice. Researchers and evaluators should explore actual experiences of the different consultation types amongst patients and the primary care team rather than hypothetical perspectives

A novel experience-based internet intervention for smoking cessation : feasibility randomised controlled trial

The iPEx programme presents independent research funded by the UK National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0608-10147). The views expressed in this paper are those of the authors, representing iPEx, and not necessarily those of the NHS, the NIHR or the Department of Health.Peer reviewedPublisher PD

Measuring the effects of online health information: Scale validation for the e-Health Impact Questionnaire

AbstractObjectiveHealth-related websites have developed to be much more than information sites: they are used to exchange experiences and find support as well as information and advice. This paper documents the development of a tool to compare the potential consequences and experiences a person may encounter when using health-related websites.MethodsQuestionnaire items were developed following a review of relevant literature and qualitative secondary analysis of interviews relating to experiences of health. Item reduction steps were performed on pilot survey data (n=167). Tests of validity and reliability were subsequently performed (n=170) to determine the psychometric properties of the questionnaire.ResultsTwo independent item pools entered psychometric testing: (1) Items relating to general views of using the internet in relation to health and, (2) Items relating to the consequences of using a specific health-related website. Identified sub-scales were found to have high construct validity, internal consistency and test-retest reliability.ConclusionAnalyses confirmed good psychometric properties in the eHIQ-Part 1 (11 items) and the eHIQ-Part 2 (26 items).Practice implicationsThis tool will facilitate the measurement of the potential consequences of using websites containing different types of material (scientific facts and figures, blogs, experiences, images) across a range of health conditions

Randomised feasibility study of a novel experience-based internet intervention to support self-management in chronic asthma.

ElectronicPeer reviewedPublisher PD

Factors contributing to the time taken to consult with symptoms of lung cancer: a cross-sectional study

<b>Objectives</b>: To determine what factors are associated with the time people take to consult with symptoms of lung cancer, with a focus on those from rural and socially deprived areas. <b>Methods</b>: A cross-sectional quantitative interview survey was performed of 360 patients with newly diagnosed primary lung cancer in three Scottish hospitals (two in Glasgow, one in NE Scotland). Supplementary data were obtained from medical case notes. The main outcome measures were the number of days from (1) the date participant defined first symptom until date of presentation to a medical practitioner; and (2) the date of earliest symptom from a symptom checklist (derived from clinical guidelines) until date of presentation to a medical practitioner. <b>Results</b>: 179 participants (50%) had symptoms for more than 14 weeks before presenting to a medical practitioner (median 99 days; interquartile range 31–381). 270 participants (75%) had unrecognised symptoms of lung cancer. There were no significant differences in time taken to consult with symptoms of lung cancer between rural and/or deprived participants compared with urban and/or affluent participants. Factors independently associated with increased time before consulting about symptoms were living alone, a history of chronic obstructive pulmonary disease (COPD) and longer pack years of smoking. Haemoptysis, new onset of shortness of breath, cough and loss of appetite were significantly associated with earlier consulting, as were a history of chest infection and renal failure. <b>Conclusion</b>: For many people with lung cancer, regardless of location and socioeconomic status, the time between symptom onset and consultation was long enough to plausibly affect prognosis. Long-term smokers, those with COPD and/or those living alone are at particular risk of taking longer to consult with symptoms of lung cancer and practitioners should be alert to this

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

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