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

“You can't do this, you've arthritis":Exploring the experiences of education and employment of young people with arthritis

Introduction: Vocational development is an integral component of adolescence with several key educational transitions occurring during this stage of life. In the context of long term health conditions and/or disability including rheumatic disease, vocational morbidities are increasingly recognised. However, only a few studies to date have used qualitative methods to report on the perspective of young people with arthritis [1,2].Objectives: To understand the experiences of education and employment of educational and vocational outcomes for young people with arthritis, from the perspective of young people themselves.Methods: We used secondary analysis of narrative and semi-structured interviews (n=49) which had been video or audio recorded from a primary qualitative study on the experiences and information and support needs of young people with arthritis [3]. A purposive, maximum variation sampling strategy had been employed. The dataset consisted of 40 young people. The dataset consisted of 39 young people (median age at interview 20, range 10 to 28 years; median age at diagnosis 11, range 2 months to 22 years) and 10 carers of young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Data analysis for the primary study combined a thematic approach with the grounded theory technique of constant comparison. NVivo software was used to assist data management and coding. The secondary analysis process aligned with Heaton’s categories of supra and supplementary analysis [4]. All 49 original transcripts were re-coded with the overarching aim to identify all material relevant to vocational experiences. We also undertook a series of workshop meetings in which the re-coded data were discussed and reviewed jointly by the authorship group to add a further layer of scrutiny, and debate and refine the emerging findings.Results: Three key themes were identified: (i) The impact of the unpredictability of arthritis symptoms on education and vocation; (ii) the negotiation of disclosure, understanding, support and flexibility in the workplace or educational setting; and (iii) the appraisal and reappraisal of life’s goals in the context of an uncertain prognosis. Findings illustrated how young people with arthritis are faced with a range of challenges and disruptions in their everyday life at a time when key developmental tasks occur, including the educational and vocational aspects of their development. Appropriate support and flexibility in the workplace or educational setting were identified as enablers to successful educational and vocational outcomes. However, negotiating disclosure was not a straightforward process for such young people, with a range of concerns andexpectations acting as barriers to disclosure. Furthermore, participants’ accounts revealed how disclosure is a necessary but not always sufficient step towards achieving an understanding and supportive environment in school or the workplace.Conclusion: There is a need to strengthen the health-school/work interface to improve the educational and vocational outcomes for young people with arthritis. Addressing disclosure with the young person and employing effective interventions to improve communication, understanding and awareness beyond the clinical domain and across workplace/educational settings are key challenges for health professionals and important areas for further research.[1] Hanson H, Hart RI, Thompson B et al. Disabil Rehabil. 2017 ; 13:1-8[2]. Shaw KL, Hackett J, Southwood TR, McDonagh JE . Br J Occupational Therapy 2006;69(3): 98-105.[3] McDonagh JE, Simmons B, Raisanen U, Zeibland S. Rheumatology (2014) 53 (suppl 3): iii18.[4] Heaton, J., 2004. Reworking qualitative data. Sage, London

Proliferation of private online healthcare companies:Should the NHS try to keep up?

With an app for just about everything, why not one for contacting your doctor? In the United Kingdom, private companies offering primary healthcare are proliferating, with Dr Morton, a website offering email or telephone consultations, and Dr Now, a smartphone app offering video consultations. Companies in the United States are offering an Uber-type experience, where instead of a car, a doctor appears at your door. These companies operate in a climate where patients want convenience, flexibility, and speed of access, features which overstretched general practitioners in the UK are struggling to provide. Meanwhile, new companies are appearing regularly, with the UK digital health market currently worth £2bn (€2.6bn; $2.8bn) and expected to grow to £2.9bn by 2018.2 What are the implications for the NHS

Evaluation of NHS Health Checks in Community Pharmacies

Background Community pharmacy is a potentially useful, easily accessed provider of NHS Health Checks. Little published work has reported outcomes or sought views of pharmacy Health Check attenders. This evaluation assessed findings of pharmacy Health Checks plus subsequent attendance after referral to general practices and obtained client views. Methods Mixed methods including: data abstraction from Health Check and practice records, questionnaire to all attenders and interviews with sample of questionnaire respondents. Results Data from 190 pharmacy Health Checks, performed in four pharmacies, showed that the majority of attenders (58%) were female, 53% white, with 80% aged under 55. Seventy five per cent had at least one modifiable cardiovascular risk factor, 8% had a cardiovascular disease risk score of ?20%, 30% were referred to their practice for further tests/consultation, but only half of these attended. Lifestyle advice was offered to 74% and referral for support with changing lifestyle accepted by 20%. Survey respondents (66) were unrepresentative and fewer had modifiable risk factors. Many indicated that making lifestyle changes and their views on pharmacy Health Checks were positive, particularly reflecting accessibility. Conclusions Pharmacy NHS Health Checks reach people with modifiable risk factors, identify those requiring further investigation and refer appropriately. Greater emphasis and encouragement are required to act on referrals if Health Checks are to maximize benefits

The shifting nature of women’s experiences and perceptions of ductal carcinoma in situ

Aim: This paper is a report of a descriptive qualitative study of the evolution of women’s perceptions and experiences of ductal carcinoma in situ from the period near to diagnosis to one year later. Background: Ductal carcinoma in situ is a non-invasive breast condition where cancer cells are detected but confined to the ducts of the breast. With treatment, the condition has a positive prognosis but ironically patients undergo treatment similar to that for invasive breast cancer. There is a lack of longitudinal qualitative research studying women’s experiences of ductal carcinoma in situ, especially amongst newly diagnosed patients and how experiences change over time. Methods: Forty-five women took part in an initial interview following a diagnosis of ductal carcinoma in situ and twenty-seven took part in a follow-up interview 9-13 months later. Data were collected between January 2007 and October 2008. Transcripts were analysed using a hybrid approach to thematic analysis. Findings: Women’s early perceptions of ductal carcinoma in situ merged and sometimes conflicted with their lay beliefs of breast cancer. Perceptions and experiences of the condition shifted over time. These overriding aspects were evident within four themes identified across the interviews: 1) perceptions of DCIS versus breast cancer, 2) from paradox to acceptance, 3) personal impact, and 4) support and interactions with others. Conclusion: This study represents one of the few longitudinal qualitative studies with newly diagnosed patients, capturing women’s initial and shifting experiences and perceptions of the condition. The issues identified need to be recognised in clinical practice and supported appropriately

Non-Equilibrium Statistical Mechanics of Classical Lattice ϕ4\phi^4 Field Theory

Classical $\phi^4$ theory in weak and strong thermal gradients is studied on the lattice in (1+1) dimensions. Classical $\phi^4$ theory in weak and strong thermal gradients is studied on the lattice in (1+1) dimensions. The steady state physics of the theory is investigated from first principles and classified into dynamical regimes. We derive the bulk properties associated with thermal transport, and explore in detail the non-equilibrium statistical mechanics of the theory as well as connections to equilibrium and irreversible thermodynamics. Linear response predictions are found to be valid for systems quite far from equilibrium and are seen to eventually break down simultaneously with local equilibrium.Comment: 28 pages, 20 fig

Long-term randomized trial of intensive versus symptomatic management in Paget's disease of bone: The PRISM-EZ study

It has been suggested that normalization of bone turnover may improve clinical outcome in Paget’s disease of bone (PDB) by preventing complications such as fractures and the progression of osteoarthritis. Here we investigated the long-term effects of a treatment strategy that aimed to normalize bone turnover in PDB with that of symptomatic treatment. The study group comprised 502 subjects who were enrolled into a three-year extension of the Paget’s Disease: Randomised Trial of Intensive versus Symptomatic Management (PRISM) study. Intensive bisphosphonate therapy was continued in 270 of these subjects with the aim of normalising serum total alkaline phosphatase (ALP) concentrations using zoledronic acid as the treatment of first-choice. Symptomatic treatment was continued in 232 subjects where bisphosphonates were given only if there was bone pain thought to be caused by PDB. The primary outcome was fracture and secondary outcomes were orthopaedic procedures, quality of life and bone pain, adjusted for baseline characteristics. Serum total ALP concentrations were significantly lower in the intensive group on entry to the study and the differences between groups increased as the study progressed. There were no clinically important differences in quality of life measures or bone pain between the treatment groups. Intensive treatment was associated with a non-significant increase in fracture risk (hazard ratio =1.90, [95% confidence interval 0.91 to 3.98], p=0.087), orthopaedic procedures (1.81 [0.71 to 4.61], p=0.214), and serious adverse events (relative risk 1.28 [0.96-1.42]. We conclude that long-term intensive bisphosphonate therapy confers no clinical benefit over symptomatic therapy and is associated with a non-significant increase in the risk of fractures, orthopaedic events and serious adverse events. The results of this study suggest that in patients with established PDB, bisphosphonate therapy should focus on control of symptoms rather than suppression of bone turnover

Patients’ initial steps to cancer diagnosis in Denmark, England and Sweden : what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

Objectives: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. Participants: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. Setting: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes. Results: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced

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

Using online patient feedback to improve NHS services : the INQUIRE multimethod study

Background Online customer feedback has become routine in many industries, but it has yet to be harnessed for service improvement in health care. Objectives To identify the current evidence on online patient feedback; to identify public and health professional attitudes and behaviour in relation to online patient feedback; to explore the experiences of patients in providing online feedback to the NHS; and to examine the practices and processes of online patient feedback within NHS trusts. Design A multimethod programme of five studies: (1) evidence synthesis and stakeholder consultation; (2) questionnaire survey of the public; (3) qualitative study of patients’ and carers’ experiences of creating and using online comment; (4) questionnaire surveys and a focus group of health-care professionals; and (5) ethnographic organisational case studies with four NHS secondary care provider organisations. Setting The UK. Methods We searched bibliographic databases and conducted hand-searches to January 2018. Synthesis was guided by themes arising from consultation with 15 stakeholders. We conducted a face-to-face survey of a representative sample of the UK population (n = 2036) and 37 purposively sampled qualitative semistructured interviews with people with experience of online feedback. We conducted online surveys of 1001 quota-sampled doctors and 749 nurses or midwives, and a focus group with five allied health professionals. We conducted ethnographic case studies at four NHS trusts, with a researcher spending 6–10 weeks at each site. Results Many people (42% of internet users in the general population) read online feedback from other patients. Fewer people (8%) write online feedback, but when they do one of their main reasons is to give praise. Most online feedback is positive in its tone and people describe caring about the NHS and wanting to help it (‘caring for care’). They also want their feedback to elicit a response as part of a conversation. Many professionals, especially doctors, are cautious about online feedback, believing it to be mainly critical and unrepresentative, and rarely encourage it. From a NHS trust perspective, online patient feedback is creating new forms of response-ability (organisations needing the infrastructure to address multiple channels and increasing amounts of online feedback) and responsivity (ensuring responses are swift and publicly visible). Limitations This work provides only a cross-sectional snapshot of a fast-emerging phenomenon. Questionnaire surveys can be limited by response bias. The quota sample of doctors and volunteer sample of nurses may not be representative. The ethnographic work was limited in its interrogation of differences between sites. Conclusions Providing and using online feedback are becoming more common for patients who are often motivated to give praise and to help the NHS improve, but health organisations and professionals are cautious and not fully prepared to use online feedback for service improvement. We identified several disconnections between patient motivations and staff and organisational perspectives, which will need to be resolved if NHS services are to engage with this source of constructive criticism and commentary from patient