Beyond beliefs: risk assessment technologies shaping patients' experiences of heart disease prevention.

Social science research on lifestyle-related diseases typically focuses on patients' understandings and beliefs and takes the clinical risk for granted. We interviewed 30 healthy UK patients at high risk of heart disease, recruited from a family history trial at 2 weeks and 6 months after a discussion with a clinician about their risk, lifestyle and medications. The participants took four different paths: (i) pharmaceutical (most common, risk reduction with cholesterol lowering statins), (ii) mixed (statins and behaviour change), (iii) behavioural (behaviour change, focus on wellbeing) and (iv) 'lost' (no prevention, difficult social/personal circumstances). Drawing on Berg we argue that coronary heart disease (CHD) risk assessment technologies are formal tools that generate, rather than represent, high risk in a way that patients often experience lifestyle change as futile, because it rarely reduces their cholesterol to targets defined by the tools. We suggest social scientists studying incipient or 'proto-diseases', such as CHD risk, should not only focus on understandings but also investigate the technologies (and the associated guidelines, policies, clinical practice and pharmaceutical industry operations) that generate incipient diseases and patients' experiences of them. However, technologies do not determine experience and we also discuss elements that direct patients down other than the pharmaceutical path.

Diagnosis Between Chaos and Control: Affect and Hospital Clinicians' and Older Adult Patients' Narratives of Urinary Tract Infections.

Research has observed that older adults are frequently overdiagnosed with urinary tract infection (UTI) and unnecessarily prescribed antibiotics in hospitals. In this article we explore the overlooked affective dimension of experiences of diagnosis and prescribing. Drawing on interviews with doctors, nurses and older adult patients (n = 41) on UTI diagnosis in two UK hospitals and Arthur Frank's work on illness narratives we identified two affective ways of experiencing diagnosis. Some clinicians and older adult patients articulated chaos narratives about being overwhelmed by contradictory evidence and events, doubting the repeated UTI diagnoses and courses of antibiotics but being unable to do anything about their concerns. Other clinicians and patients articulated control narratives about UTIs being frequently diagnosed and antibiotics prescribed to restore patients' health, echoing certainty and security, even if the processes described typically did not follow current guidance. We contend that analyzing the affective dimension offers conceptual insights that push forward sociological discussions on diagnosis as reflective or dogmatic in the context of the contradiction between acute care and chronic illnesses of old age. Our findings contribute practical ideas of why overdiagnosis and overprescribing happen in hospitals and complicate notions of patients pressuring for antibiotics. We also present methodological suggestions for analyzing how participants tell about their experiences in order to explore the typically not directly spoken affective dimension that influences thoughts and actions about diagnosis.

Gaps in communication between different staff groups and older adult patients foster unnecessary antibiotic prescribing for urinary tract infections in hospitals: a qualitative translation approach.

Background: Studies have reported large scale overprescribing of antibiotics for urinary tract infection (UTI) in hospitalised older adults. Older adults often have asymptomatic bacteriuria, and clinicians have been found to diagnose UTIs inappropriately based on vague symptoms and positive urinalysis and microbiology. However, the joined perspectives of different staff groups and older adult patients on UTI diagnosis have not been investigated. Methods: Thematic analysis of qualitative interviews with healthcare staff (n = 27) and older adult patients (n = 14) in two UK hospitals. Results: Interviews featured a recurrent theme of discrepant understandings and gaps in communication or translation between different social groups in three key forms: First, between clinicians and older adult patients about symptom recognition. Second, between nurses and doctors about the use and reliability of point-of-care urinary dipsticks. Third, between nurses, patients, microbiologists and doctors about collection of urine specimens, contamination of the specimens and interpretation of mixed growth laboratory results. The three gaps in communication could all foster inappropriate diagnosis and antibiotic prescribing. Conclusion: Interventions to improve diagnosis and prescribing for UTIs in older adults typically focus on educating clinicians. Drawing on the sociological concept of translation and interviews with staff and patients our findings suggest that inappropriate diagnosis and antibiotic prescribing in hospitals can be fuelled by gaps in communication or translation between different staff groups and older adult patients, using different languages and technologies or interpreting them differently. We suggest that interventions in this area may be improved by also addressing discrepant understandings and communication about symptoms, urinary dipsticks and the process of urinalysis.

Findings of the Chronic Obstructive Pulmonary Disease-Sitting and Exacerbations Trial (COPD-SEAT) in Reducing Sedentary Time Using Wearable and Mobile Technologies With Educational Support: Randomized Controlled Feasibility Trial.

BACKGROUND: Targeting sedentary time post exacerbation may be more relevant than targeting structured exercise for individuals with chronic obstructive pulmonary disease. Focusing interventions on sitting less and moving more after an exacerbation may act as a stepping stone to increase uptake to pulmonary rehabilitation. OBJECTIVE: The aim of this paper was to conduct a randomized trial examining trial feasibility and the acceptability of an education and self-monitoring intervention using wearable technology to reduce sedentary behavior for individuals with chronic obstructive pulmonary disease admitted to hospital for an acute exacerbation. METHODS: Participants were recruited and randomized in hospital into 3 groups, with the intervention lasting 2 weeks post discharge. The Education group received verbal and written information about reducing their time in sedentary behavior, sitting face-to-face with a study researcher. The Education+Feedback group received the same education component along with real-time feedback on their sitting time, stand-ups, and steps at home through a waist-worn inclinometer linked to an app. Patients were shown how to use the technology by the same study researcher. The inclinometer also provided vibration prompts to encourage movement at patient-defined intervals of time. Patients and health care professionals involved in chronic obstructive pulmonary disease exacerbation care were interviewed to investigate trial feasibility and acceptability of trial design and methods. Main quantitative outcomes of trial feasibility were eligibility, uptake, and retention, and for acceptability, were behavioral responses to the vibration prompts. RESULTS: In total, 111 patients were approached with 33 patients recruited (11 Control, 10 Education, and 12 Education+Feedback). Retention at 2-week follow-up was 52% (17/33; n=6 for Control, n=3 for Education, and n=8 for Education+Feedback). No study-related adverse events occurred. Collectively, patients responded to 106 out of 325 vibration prompts from the waist-worn inclinometer (32.62%). Within 5 min of the prompt, 41% of responses occurred, with patients standing for a mean 1.4 (SD 0.8) min and walking for 0.4 (SD 0.3) min (21, SD 11, steps). Interviews indicated that being unwell and overwhelmed after an exacerbation was the main reason for not engaging with the intervention. Health care staff considered reducing sedentary behavior potentially attractive for patients but suggested starting the intervention as an inpatient. CONCLUSIONS: Although the data support that it was feasible to conduct the trial, modifications are needed to improve participant retention. The intervention was acceptable to most patients and health care professionals. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 13790881; http://www.isrctn.com/ISRCTN13790881 (Archived by WebCite at http://www.webcitation.org/6xmnRGjFf).

Patients' understanding of genetic susceptibility testing in mainstream medicine: qualitative study on thrombophilia.

BACKGROUND: UK and US policy initiatives have suggested that, in the future, patients and clinicians in mainstream medicine could use genetic information to prevent common illnesses. There are no studies on patients' experience and understanding of the process of testing for common genetic susceptibilities in mainstream medicine. METHODS: Qualitative interviews with 42 individuals who had undergone testing for a genetic susceptibility for deep vein thrombosis in primary and secondary care in the UK. RESULTS: Some participants, often from higher social classes, had a good understanding of the test and its implications. They had often sought additional information on thrombophilia from relatives and from the Internet. Others, often from less privileged backgrounds, had a poorer understanding of the test--seven individuals were unaware of having had the genetic test. Features of genetic information led to misunderstandings: (i) at referral, (ii) when communicating results, and (iii) when making sense of the implications of testing. Participants' accounts indicated that non-specialist doctors may feel obliged to refer a patient for a genetic test they know little about, because a patient requests it after a relative had tested positive. Sometimes a referral for a genetic test was lost under information overload when multiple tests and issues were considered. The inconsistent and informal ways of communicating test results--for example by phone--in mainstream medicine also led to confusion. Participants did not generally overestimate their risk, but some were uncertain about whether they were taking the right preventive actions and/or whether their children were at risk. Information about genetic susceptibilities was difficult to make sense of, as it related to ambiguous risks for participants and family members, complicated and unfamiliar terminology and multiple genes and preventive strategies. CONCLUSION: Policy visions of clinicians and patients in mainstream medicine seeking and using genetic information at their own initiative may not be realistic. Patients need more direct support in making sense of genetic information, if this information is to bring the anticipated health benefits, and not fuel health inequalities or create ethical problems. Clinicians in secondary and primary care need guidance to help them introduce genetic tests, communicate their results and explain their implications.

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia.

Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered "exceptional" and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or "in depth" knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support.

Study protocol for Chronic Obstructive Pulmonary Disease-Sitting and ExacerbAtions Trial (COPD-SEAT): a randomised controlled feasibility trial of a home-based self-monitoring sedentary behaviour intervention.

INTRODUCTION: An acute exacerbation of chronic obstructive pulmonary disease (COPD) marks a critical life event, which can lower patient quality of life and ability to perform daily activities. Patients with COPD tend to lead inactive and highly sedentary lifestyles, which may contribute to reductions in functional capacity. Targeting sedentary behaviour (SB) may be more attainable than exercise (at a moderate-to-vigorous intensity) for behaviour change in patients following an exacerbation. This study aims to evaluate the feasibility and acceptability of a 2-week at-home intervention providing education and self-monitoring to reduce prolonged periods of SB in patients with COPD discharged following an acute exacerbation. METHODS AND ANALYSIS: Patients will be randomised into 1 of 3 conditions: usual care (control), education or education+feedback. The education group will receive information and suggestions about reducing long periods of sitting. The education+feedback group will receive real-time feedback on their sitting time, stand-ups and step count at home through an inclinometer linked to a smart device app. The inclinometer will also provide vibration prompts to encourage movement when the wearer has been sedentary for too long. Data will be collected during hospital admission and 2 weeks after discharge. Qualitative interviews will be conducted with patients in the intervention groups to explore patient experiences. Interviews with healthcare staff will also be conducted. All data will be collected January to August 2016. The primary outcomes are feasibility and acceptability, which will be assessed by qualitative interviews, uptake and drop-out rates, reasons for refusing the intervention, compliance, app usage and response to vibration prompts. ETHICS AND DISSEMINATION: The research ethics committee East Midlands Leicester-Central has provided ethical approval for the conduct of this study. The results of the study will be disseminated through appropriate conference proceedings and peer-reviewed journals. TRIAL REGISTRATION NUMBER: ISRCTN13790881; Pre-results.

Negotiating the boundary between medicine and consumer culture: online marketing of nutrigenetic tests.

Genomics researchers and policy makers have accused nutrigenetic testing companies--which provide DNA-based nutritional advice online--of misleading the public. The UK and USA regulation of the tests has hinged on whether they are classed as "medical" devices, and alternative regulatory categories for "lifestyle" and less-serious genetic tests have been proposed. This article presents the findings of a qualitative thematic analysis of the webpages of nine nutrigenetic testing companies. We argue that the companies, mirroring and negotiating the regulatory debates, were creating a new social space for products between medicine and consumer culture. This space was articulated through three themes: (i) how "genes" and tests were framed, (ii) how the individual was imagined vis a vis health information, and (iii) the advice and treatments offered. The themes mapped onto four frames or models for genetic testing: (i) clinical genetics, (ii) medicine, (iii) intermediate, and (iv) lifestyle. We suggest that the genomics researchers and policy makers appeared to perform what Gieryn (Gieryn, T.F. (1983). Boundary-work and the demarcation of science from non-science: strains and interests in professional ideologies of scientists. American Sociological Review, 48, 781-795.) has termed "boundary work", i.e., to delegitimize the tests as outside proper medicine and science. Yet, they legitimated them, though in a different way, by defining them as lifestyle, and we contend that the transformation of the boundaries of science into a creation of such hybrid or compromise categories is symptomatic of current historical times. Social scientists studying medicine have referred to the emergence of "lifestyle" products. This article contributes to this literature by examining the historical, regulatory and marketing processes through which certain goods and services become defined this way.

Making sense of being at 'high risk' of coronary heart disease within primary prevention.

Current National Health Service policy advocates screening to identify individuals at 'high risk' of cardio-vascular disease (CHD) in primary care. This article utilizes the work of Radley to explore how 'high risk' of CHD patients make sense of their new risk status. Results are presented here from a nested qualitative study within a quantitative randomized trial of a CHD risk intervention in primary care. 'Discovery' interviews were conducted with 'high risk' participants (n = 38, mean age = 55) two weeks after intervention and thematically analysed. In response to perceived threat, many participants sought to both 'minimize' and 'normalize' their risk status. They also reported intentions to act, particularly concerning dietary change and exercise, although less so for smoking amongst the lower socio-economic status participants. Such perceptions and intentions were contextualized within the life-course of later middle-age, so that both being at risk, and being treated for risk, were normalized as part of growing older. Social position, such as gender and SES, was also implicated. CHD risk interventions should be context-sensitive to the life-course and social position of those who find themselves at 'high risk' of CHD in later middle-age.

Assessing family history of heart disease in primary care consultations: a qualitative study.

BACKGROUND: Current primary prevention guidelines recommend the assessment of family history of coronary heart disease (CHD) to identify at-risk individuals. OBJECTIVE: To examine how clinicians and patients understand and communicate family history in the context of CHD risk assessment in primary care. METHODS: A qualitative study. Patients completed a validated family history questionnaire. Consultations with clinicians were video recorded, and semi-structured interviews conducted with patients after consultation. The participants were 21 primary care patients and seven primary care clinicians (two practice nurses, five GPs). Four practices in South West England. RESULTS: Patients and clinicians usually agreed about the patient's level of risk and how to reduce it. Patients were mostly satisfied with their consultations and having their family history assessed. However, three issues were identified from the consultations which contributed to concerns and unanswered questions for patients. Problems arose when there were few modifiable risk factors to address. Firstly, patients' explanations of their family history were not explored in the consultation. Secondly, the relationship between the patient's family history and their other risk factors, such as smoking or cholesterol, was rarely discussed. Thirdly, clinicians did not explain the integration of family history into the patient's overall cardiovascular disease risk. CONCLUSIONS: Clinicians appeared to lack a rhetoric to discuss family history, in terms of capturing both genetic and environmental factors and its relation to other risk factors. This created uncertainties for patients and carries potential clinical and social implications. There is a need for better guidance for primary care clinicians about family history assessment.