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Background Self-monitoring of blood pressure (BP) has been shown to be effective at improving BP control in the general population. The OPTIMUM-BP feasibility study was a prospective randomised controlled trial of self-monitoring of BP (SMBP) during hypertensive pregnancy. Objective To explore experiences, perceptions, and use of the OPTIMUM-BP self-monitoring intervention. Study design Qualitative study within the OPTIMUM-BP feasibility trial. Semi-structured interviews with a purposive sample of pregnant women with chronic hypertension (n = 24) and their clinicians (n = 8) as well as 38 ethnographic observations of antenatal visits. Results Women found self-monitoring of BP feasible and acceptable and were highly motivated and pro-active in their monitoring, reporting greater control and knowledge of BP and reassurance. Women’s persistence with SMBP was driven by a perceived need to safeguard the pregnancy, particularly among those taking antihypertensive medication. Clinicians also described the intervention as acceptable, though BP variability could cause uncertainty. Clinicians used different heuristics to integrate home and clinic readings. Observations suggested close working relationships between women and clinicians were key for confident integration of self-monitoring. Conclusions Self-monitoring of BP was acceptable both to pregnant women with hypertension and their clinicians. More research is needed to understand BP variability within pregnancy to help interpret and integrate home BP readings for improved BP management. Clinical pathways that use BP self-monitoring should aim to maintain the continuity of care and relationships that are valued and appear pivotal for the confident and safe use of self-monitoring in pregnancy.

Made available in DSpace on 2022-04-28T19:29:02Z (GMT). No. of bitstreams: 0 Previous issue date: 2020-07-01 Medical Research Council Canada National Institute for Health Research Objectives: To develop consensus definitions for the core outcome set for pre-eclampsia. Study design: Potential definitions for individual core outcomes were identified across four formal definition development initiatives, nine national and international guidelines, 12 Cochrane systematic reviews, and 79 randomised trials. Eighty-six definitions were entered into the consensus development meeting. Ten healthcare professionals and three researchers, including six participants who had experience of conducting research in low- and middle-income countries, participated in the consensus development process. The final core outcome set was approved by an international steering group. Results: Consensus definitions were developed for all core outcomes. When considering stroke, pulmonary oedema, acute kidney injury, raised liver enzymes, low platelets, birth weight, and neonatal seizures, consensus definitions were developed specifically for low- and middle-income countries because of the limited availability of diagnostic interventions including computerised tomography, chest x-ray, laboratory tests, equipment, and electroencephalogram monitoring. Conclusions: Consensus on measurements for the pre-eclampsia core outcome set will help to ensure consistency across future randomised trials and systematic reviews. Such standardization should make research evidence more accessible and facilitate the translation of research into clinical practice. Video abstract can be available at: www.dropbox.com/s/ftrgvrfu0u9glqd/6.%20Standardising%20definitions%20in%20teh%20pre-eclampsia%20core%20outcome%20set%3A%20a%20consensus%20development%20study.mp4?dl=0. Nuffield Department of Primary Care Health Sciences University of Oxford Institute for Women’s Health University College London Department of Women and Children’s Health School of Life Course Sciences King’s College London Department of Obstetrics and Gynecology Amsterdam UMC Academic Medical Center Academic Neonatal Medicine Imperial College London Department of Renal Medicine St George Hospital and University of New South Wales Department of Obstetrics and Gynaecology Feinberg School of Medicine Northwestern University Health Services Research Unit Nuffield Department of Population Health University of Oxford Cedars-Sinai Medical Center London North West University Healthcare NHS Trust Women’s Health Care Research Group Department of Obstetrics and Gynaecology Monash University Department of Obstetrics and Gynaecology University of Adelaide Women’s Health Research Unit Barts and The London School of Medicine and Dentistry School of Health and Related Research University of Sheffield MRC North West Hub for Trials Methodology Research Department of Biostatistics University of Liverpool Centro Rosarino de Estudios Perinatales Chelsea and Westminster Hospital NHS Foundation Trust Babcock University Ailem Academic Counselling KU Leuven Universidad Nacional de Colombia Northwell Health University of Oxford Université de Montréal University of Montreal Hospital Centre Ondokuz Mayıs University Prince Sultan Military Medical City Postgraduate Institute of Medical Education and Research King's Fertility Fetal Medicine Research Institute University Hospital Limerick Drexel University University of Aberdeen University of Groningen University of Auckland Haaglanden Medisch Centrum Nottingham University Medical School Utrecht University King Edward Memorial Hospital for Women Imperial College Healthcare NHS Trust Jean-Verdier Hospital Downland Practice University of Campinas Université Lyon University of North Carolina School of Medicine South Ural State Medical University Stellenbosch University Irish Neonatal Health Alliance University of Rzeszow Royal Brisbane and Women’s Hospital Nottingham University Hospitals NHS Trust University Hospitals of Leicester North Bristol NHS Trust University of Nottingham Soroka University Medical Center Ben Gurion University of the Negev St George’s University Hospitals NHS Foundation Trust Hospitalsenhed Midt University of Glasgow Amsterdam Universitair Medische Centra All India Institute of Medical Sciences Patna Luton and Dunstable University Hospital Khyber Medical University Institution of Medical Sciences Midwife Mid Essex Hospitals NHS Trust University of Oulu University of Michigan Bastyr University Irish Nurses and Midwives Organisation University of Toronto Barts Health NHS Trust University Hospitals Plymouth NHS Trust Burnet Institute Aga Khan University Medical University of Graz Homerton University Hospital NHS Foundation Trust Mount Royal University Université de Paris Royal Surrey County Hospital University Hospital Southampton NHS Foundation Trust University of Washington School of Nursing Evelina London Children's Hospital Neonatal Unit University of Sydney University of Leicester Academic Hospital of Udine NHS Borders Weill Cornell Medical College University of Dundee University of Edinburgh South Australian Health and Medical Research Institute University of Sheffield Monash University and Monash Health United Lincolnshire Hospitals NHS Trust University of Kwa Zulu-Natal Beatrix Hospital Keele University Government Medical College Institut Catala de la Salut. IdiapJgol University College London National Center for Child Health and Development Basavatarakam Indo-American Cancer Hospital and Research Institute Axon Anaesthesia Associates Pennine Acute Hospitals NHS Trust St George's University of London Norfolk and Norwich University Hospital Jichi Medical University School of Medicine São Paulo State University National Institute of Public Health University of Kyrenia King Edward Memorial Hospital Amsterdam University Centres University of British Columbia Chulalongkorn University University of Brescia University Of British Columbia University of Montreal Women's Clinic of Tartu University Hospital Universidade Federal de São Paulo Université de Sherbrooke University Hospital of Wales University of Iowa King's College London Westmead Hospital Princess Royal Maternity Leipzig University Centre Hospitalier Public du Cotentin Lewisham and Greenwich NHS Trust Juntendo University Faculty of Medicine Western Sydney University National Institute of Health Research University of Washington Baylor College of Medicine Capelle aan den Ijssel Sanatorio Anchorena Oxford University Hospitals NHS Foundation Trust University of Leeds Institute of Medical Sciences UPMC Magee Womens Hospital Penn Medicine Princeton Health University of North Carolina at Chapel Hill São Paulo State University

Background People’s social and economic circumstances are important determinants of their health, health experiences, healthcare access, and healthcare outcomes. However, patients’ socioeconomic circumstances are rarely asked about or documented in healthcare settings. We conducted a systematic review of published reasons for why patients’ socioeconomic contexts (including education, employment, occupation, housing, income, or wealth) should, or should not, be enquired about. Methods Systematic review of literature published up to and including 2016. A structured literature search using databases of medicine and nursing (pubmed, embase, global health), ethics (Ethicsweb), social sciences (Web of Science), and psychology (PsychINFO) was followed by a ‘snowball’ search. Eligible publications contained one or more reasons for: asking patients about socioeconomic circumstances; collecting patients’ socioeconomic information; ‘screening’ patients for adverse socioeconomic circumstances; or linking other sources of individual socioeconomic data to patients’ healthcare records. Two authors conducted the screening: the first screened all references, the second author screened a 20% sample with inter-rater reliability statistically confirmed. ‘Reason data’ was extracted from eligible publications by two authors, then analysed and organised. Results We identified 138 eligible publications. Most offered reasons for why patients’ should be asked about their socioeconomic circumstances. Reasons included potential improvements in: individual healthcare outcomes; healthcare service monitoring and provision; population health research and policies. Many authors also expressed concerns for improving equity in health. Eight publications suggested patients should not be asked about their socioeconomic circumstances, due to: potential harms; professional boundaries; and the information obtained being inaccurate or unnecessary. Conclusions This first summary of literature on the subject found many published reasons for why patients’ social and economic circumstances should be enquired about in healthcare settings. These reasons include potential benefits at the levels of individuals, health service provision, and population, as well as the potential to improve healthcare equity. Cautions and caveats include concerns about the clinician’s role in responding to patients’ social problems; the perceived importance of social health determinants compared with biomedical factors; the use of average population data from geographic areas to infer the socioeconomic experience of individuals. Actual evidence of outcomes is lacking: our review suggests hypotheses that can be tested in future research.

Objective\ud To develop a core outcome set for pre‐eclampsia.\ud \ud Design\ud Consensus development study.\ud \ud Setting\ud International.\ud \ud Population\ud Two hundred and eight‐one healthcare professionals, 41 researchers and 110 patients, representing 56 countries, participated.\ud \ud Methods\ud Modified Delphi method and Modified Nominal Group Technique.\ud \ud Results\ud A long‐list of 116 potential core outcomes was developed by combining the outcomes reported in 79 pre‐eclampsia trials with those derived from thematic analysis of 30 in‐depth interviews of women with lived experience of pre‐eclampsia. Forty‐seven consensus outcomes were identified from the Delphi process following which 14 maternal and eight offspring core outcomes were agreed at the consensus development meeting. Maternal core outcomes: death, eclampsia, stroke, cortical blindness, retinal detachment, pulmonary oedema, acute kidney injury, liver haematoma or rupture, abruption, postpartum haemorrhage, raised liver enzymes, low platelets, admission to intensive care required, and intubation and ventilation. Offspring core outcomes: stillbirth, gestational age at delivery, birthweight, small‐for‐gestational‐age, neonatal mortality, seizures, admission to neonatal unit required and respiratory support.\ud \ud Conclusions\ud The core outcome set for pre‐eclampsia should underpin future randomised trials and systematic reviews. Such implementation should ensure that future research holds the necessary reach and relevance to inform clinical practice, enhance women's care and improve the outcomes of pregnant women and their babies.

© 2019 Royal College of Obstetricians and Gynaecologists Objective: To quantify the effect of different methodological decisions on the identification of potential core outcomes to inform the development of recommendations for future core coutcome set developers. Design: Mixed methods study. Setting: A core outcome set for pre-eclampsia was used as an exemplar. Sample: A long list of potential core outcomes was developed by undertaking a systematic review of pre-eclampsia trials and performing a thematic analysis of in-depth patient interviews. Methods: Specific methods used to generate long lists of potential core outcomes were evaluated. Results: Different methodological decisions had a substantial impact on the identification of potential core outcomes. Extracting outcomes from published pre-eclampsia trials was an effective way of identifying 48 maternal, eight fetal, 25 neonatal outcomes, and eight patient-reported outcomes. Limiting the extraction of outcomes to primary outcomes or outcomes commonly reported in pre-eclampsia trials reduced the number and diversity of potential core outcomes identified. Thematic analysis of in-depth patient interviews ensured an additional five patient reported outcomes and six outcomes related to future child health were identified. Conclusions: Future core outcome set developers should use quantitative and qualitative methods when developing a long list of potential core outcomes. Tweetable abstract: @OfficialNIHR research published in @BJOGtweets informs new recommendations for future @coreoutcomes developers.

© 2017 Royal College of Obstetricians and Gynaecologists Background: Standardising outcome collection and reporting in pre-eclampsia trials requires an appraisal of current outcome reporting. Objectives: To map maternal and offspring outcome reporting across randomised trials evaluating therapeutic interventions for pre-eclampsia. Search strategy: Randomised trials were identified by searching bibliographical databases from inception to January 2016. Selection criteria: Randomised controlled trials. Data collection and analysis: We systematically extracted and categorised outcome reporting. Main results: Seventy-nine randomised trials, reporting data from 31 615 maternal participants and 28 172 of their offspring, were included. Fifty-five different interventions were evaluated. Included trials reported 119 different outcomes, including 72 maternal outcomes and 47 offspring outcomes. Maternal outcomes were inconsistently reported across included trials; for example, 11 trials (14%) reported maternal mortality, reporting data from 12 422 participants, and 16 trials (20%) reported cardiovascular morbidity, reporting data from 14 963 maternal participants. Forty-three trials (54%) reported fetal outcomes and 23 trials (29%) reported neonatal outcomes. Twenty-eight trials (35%) reported offspring mortality. There was poor reporting of childhood outcomes: six trials (8%) reported neurodevelopmental outcomes. Less than half of included trials reported any relevant information regarding harms for maternal participants and their offspring. Conclusions: Most randomised trials evaluating interventions for pre-eclampsia are missing information on clinically important outcomes, and in particular have neglected to evaluate efficacy and safety in the offspring of participants. Developing and implementing a minimum data set, known as a core outcome set, in future pre-eclampsia trials could help to address these issues. Tweetable abstract: Future #preeclampsia research requires a core outcome set to reduce #research waste. @coreoutcomes @jamesmnduffy. International Prospective Register of Systematic Reviews: CRD42015015529; www.crd.york.ac.uk/PROSPERO/display_record.aspID=CRD42015015529.

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.

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 pre-diagnostic 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 the six 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 GP 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.

Background Standardising outcome collection and reporting in pre-eclampsia trials requires an appraisal of current outcome reporting. Objectives To map maternal and offspring outcome reporting across randomised trials evaluating therapeutic interventions for pre-eclampsia. Search strategy Randomised trials were identified by searching bibliographical databases from inception to January 2016. Selection criteria Randomised controlled trials. Data collection and analysis We systematically extracted and categorised outcomes reporting. Main results Seventy-nine randomised trials, reporting data from 31,615 maternal participants and 28,172 of their offspring, were included. Fifty-five different interventions were evaluated. Included trials reported 119 different outcomes, including 72 maternal outcomes and 47 offspring outcomes. Maternal outcomes were inconsistently reported across included trials, for example, 11 (14%) trials reported maternal mortality, reporting data from 12,422 participants (39%), and 16 (20%) trials reported cardiovascular morbidity, reporting data from 14,963 maternal participants (43%). Forty-three (54%) trials reported fetal outcomes and 23 (29%) trials reported neonatal outcomes. Twenty-eight trials (35%) reported offspring mortality. There was poor reporting of childhood outcomes: six trials (8%) reported neurodevelopmental outcomes. Less than half of included trials reported any relevant information regarding harms for maternal participants and their offspring. Conclusions Most randomised trials evaluating interventions for pre-eclampsia are missing information on clinically important outcomes and in particular have neglected to evaluate efficacy and safety in the offspring of participants. Developing and implementing a minimum core data set, known as a core outcome set, in future pre-eclampsia trials could help to address these issues.

OBJECTIVE: To determine the effectiveness of health checks, performed by nurses in primary care, in reducing risk factors for cardiovascular disease and cancer. DESIGN: Randomised controlled trial. SETTING: Five urban general practices in Bedfordshire. SUBJECTS: 2205 men and women who were randomly allocated a first health check in 1989-90 and a re-examination in 1992-3 (the intervention group); 1916 men and women who were randomly allocated an initial health check in 1992-3 (the control group). All subjects were aged 35-64 at recruitment in 1989. MAIN OUTCOME MEASURES: Serum total cholesterol concentration, blood pressure, body mass index, and smoking prevalence (with biochemical validation of cessation); self reported dietary, exercise, and alcohol habits. RESULTS: Mean serum total cholesterol was 3.1% lower in the intervention group than controls (difference 0.19 mmol/l (95% confidence interval 0.12 to 0.26)); in women it was 4.5% lower (P < 0.0001) and in men 1.6% (P < 0.05), a significant difference between the sexes (P < 0.01). Self reported saturated fat intake was also significantly lower in the intervention group. Systolic and diastolic blood pressures and body mass index were respectively 1.9%, 1.9%, and 1.4% lower in the intervention group (P < 0.005 in all cases). There was a 3.9% (2.4 to 5.3) difference in the percentage of subjects with a cholesterol concentration > or = 8 mmol/l, but no significant differences in the number with diastolic blood pressure > or = 100 mm Hg or body mass index > or = 30 kg/m2. There was no significant difference between the two groups in prevalence of smoking or excessive alcohol use. Annual rechecks were no more effective than a single recheck at three years, but health checks led to a significant increase in visits to the nurse according to patients' degree of cardiovascular risk. CONCLUSIONS: The benefits of health checks were sustained over three years. The main effects were to promote dietary change and reduce cholesterol concentrations; small differences in blood pressure may have been attributable to accommodation to measurement. The benefits of systematic health promotion in primary care are real, but must be weighed against the costs in relation to other priorities.

BACKGROUND: Financial worries may add to the stress experienced by patients and their families, but they are often not discussed with health professionals. People with lung cancer usually have to give up work, and many are terminally ill. AIM: To explore the financial concerns, perceptions and experiences of claiming benefits of people with lung cancer. DESIGN OF STUDY: Qualitative study using narrative interviews. SETTING: United Kingdom. METHOD: Interviews with a maximum variation sample of 45 people with lung cancer, recruited through general practitioners, consultants, nurses and support groups. RESULTS: Some people did not know that they could claim financial benefits, others found claim forms complicated, or were unaware that they had no legal right for important allowances to be backdated. Some people had to 'struggle' to obtain much needed benefits to which they were entitled. Patients below retirement age said that they would prefer to be working, and many were shocked by how hard it was to obtain the information needed to make claims. There was some evidence that even those who are seriously ill, and life-time tax payers, feel stigma in claiming financial help. Nurses, doctors and other patients sometimes offered valuable guidance, but many patients did not receive timely advice. The special social security rules (and DS1500 report form), which might have allowed them to claim benefits more rapidly than usual and at a higher rate, were not always understood. CONCLUSION: Many reasons were found as to why people with lung cancer have difficulty getting the benefits that they are entitled to. Hospital and primary care staff who handle the issue sensitively and help set claims in motion provide a valuable service that should be replicated throughout the National Health Service.

Objectives NICE guidelines recommend immediate antibiotic treatment of respiratory tract infections in “at-risk” individuals with co-morbidities. Observational evidence suggests that influenza particularly predisposes children to bacterial complications. This study investigates GPs’ accounts of factors influencing their decision-making about antibiotic prescribing in management of at-risk children with influenza-like illness (ILI). Design Qualitative interview study using a maximum variation sample with thematic analysis through constant comparison Setting Semi-structured telephone interviews with UK GPs using a case vignette of a child with co-morbidities presenting with ILI Participants 41 GPs (41.5% male; 40 from England, 1 from Northern Ireland) with a range of characteristics including length of time in practice, paediatrics experience, practice setting, and deprivation. Results There was considerable uncertainty and variation in the way GPs responded to the case, and difference of opinion about how long-term co-morbidities should affect their antibiotic prescribing. Factors influencing their decision included the child’s case history and clinical examination; the GP’s view of the parent’s ability to self-manage; the GP’s own confidence and experiences of managing sick children; and assessment of individual vs. abstract risk. GPs rarely mentioned potential influenza infection or asked about immunisation status. All said they would want to see the child; views about delayed prescribing varied in relation to local health service provision including options for follow-up and paediatric services. Conclusions The study demonstrates diagnostic uncertainty and wide variation in GP decision-making about prescribing antibiotics to children with co-morbidity. Future guidelines might encourage consideration of a specific diagnosis such as influenza and risk assessment tools could be developed to allow clinicians to quantify the levels of risk associated with different types of co-morbidity. However, the wide range of clinical and non-clinical factors involved in decision-making during these consultations should also be considered in future guidelines.

This article looks at how patients with pancreatic cancer use the Internet, and considers its potential negative effects for people with a life threatening illness. We designed a qualitative study using semi-structured interviews collected by maximum variation sampling. Respondents were recruited from all over the UK in 2009/10. We interviewed 32 people with pancreatic cancer and eight relatives/carers of people who had recently died of pancreatic cancer. In contrast to a similar study we undertook in 2004, we found that the people interviewed in 2009/10 talked about using the Internet for health information as if it were a routine and unremarkable part of life. Patients gave few examples of harm from using the Internet, or of damage caused to their relationships with health professionals. We also found that patients and family carers were using a strategy to handle alarming information found online, with patients asking partners and family to filter what they found. In conclusion, concerns about serious negative effects of using the Internet for health information may be ill-founded, even when the Internet is used by patients with serious life threatening illness. Clinicians may worry that people will find unwanted or contradictory information, but it is probably counter-productive to try to steer people away from the web. Similarly, policy makers have focused on regulating the factual content of information on the web, but we found that it was the consequences of stumbling on factually correct, yet unwelcome, information that concerned the patients and their families in this study. Good practice guidelines and quality markers for health information may need to pay more attention to website design and user routing as well as factual content. © 2012 Policy Studies Organization.

OBJECTIVE: To understand what leads men to choose 'watchful waiting' rather than active treatment for cancer of the prostate. PATIENTS AND METHODS: Fifty men with confirmed prostate cancer in England, Wales and Scotland were interviewed about all aspects of their illness, for a Database of Individual Patients' Experience of illness. The sample included men at different stages of diagnosis and with experience of a wide range of treatments. We report here only what men said about their choice of treatment and the decision-making process. RESULTS: Watchful waiting would have been clinically inappropriate for almost half of the men (those with serious urinary symptoms and those with metastatic disease). However, few of the men who might have chosen watchful-waiting remembered this being presented as a serious option. Most in this group chose radical prostatectomy, radiotherapy, brachytherapy or cryosurgery. The few who chose watchful waiting had found doctors who supported their decision, had assessed the evidence from Internet sites, and were concerned about the side-effects and uncertain outcome of treatment. Men who chose watchful waiting, as well as those who opted for treatment, described considerable pressure from family members, doctors or support groups, to seek active treatment. CONCLUSION: This study helps to explain why some men will not contemplate watchful waiting, and why others may find it difficult to pursue that option. Understanding men's concerns may help clinicians to support men's treatment decisions. Treatment for prostate cancer is highly controversial because no randomized, controlled trials have shown whether or not active intervention increases survival. If trials are not completed it cannot be determined whether active treatments are the best course of action for men with prostate cancer.

We describe a large systematic collection of personal experiences of ilnesses and other health problems based on qualitative video- and audiointerviews with people in their homes. These are analysed and summarised on the website www.dipex.org, which is freely accessible to everyone. They are intended to help new patients and their families to understand the condition and what it may involve, and to help them in making important decisions together with their doctors and other professionals. The site is also valuable in teaching students and trainees in the health professions, by showing them how widely people differ in their experiences of illness and how they cope with problems. Students can learn directly how important it is to listen to patients in order to understand them and help them. © Hippocampus Verlag 2008.

DIPEx (Database of Individual Patients' Experience of illness) is a new multimedia website (www.dipex.org) launched in July 2001. The plans were described in the Lancet last year. It links a database of patients' experiences of two serious conditions - essential hypertension and prostatic cancer - with evidence-based information about the illness and treatment options, and a range of other resources that may be useful, including support groups and hyperlinks to other websites. DIPEx aims to identify the questions and problems that matter to people when they are ill or have a health-related problem. It has great potential for informing patients and educating doctors, nurses and other health professionals, and it is a means of providing a patient-centred perspective to researchers, managers and those who commission health services. The DIPEx project combines a systematic collection and analysis of interviews with people about their experience of illness with evidence of the effects of treatments, and information about support groups and other resource materials. We believe that the DIPEx database is unique in the field of patient and healthcare communication. To ensure that it can operate independently of sectional interests it is now constituted as a charity governed by a board of trustees. The module for each condition included in the database begins with a videotaped summary of the interviews, with excerpts presented to illustrate the themes. Users can watch, listen to or read parts of the actual interviews. If they wish to move directly to particular topics, the keyword and hyperlink facilities will help them to navigate the site. The hyperlinks enable users to click on keywords to access other linked areas of the site, for example research evidence about the effectiveness of a specific treatment. The appeal and potency of illness narratives in written and electronic format has been amply demonstrated. However, even the many excellent descriptions of illness experience that exist are scattered and difficult to find when they are needed. The DIPEx project will draw together a single resource for all users, with relevant, evidence-based information and narratives reflecting the aspects of the illness that matter to those with the condition.

Objective. To study knowledge, altitudes, beliefs and sources of knowledge about emergency contraception in a sample of sexually active women, combining quantitative and qualitative methods. Design. Self administered questionnaire to women attending family planning clinics in London and Oxfordshire and interviews with those attending for emergency contraception. Subjects. Five hundred and ten women completed the questionnaire. Fifty three women who were seeking emergency contraception also took part in a semi-structured interview. Results. The respondents were well informed about the time limits and effectiveness of emergency contraception, yet 43 per cent believed it to be more risky to their health than regular use of combined oral contraception and 15 per cent were very concerned about the possible side effects. Conclusion. Many women are likely to remain resistant to using a treatment which is perceived as a strong dose of potentially toxic chemicals. The consensus of professional opinion on the safety of hormonal emergency contraception is not reflected among family planning clients. This needs to be taken into account by both health professionals advising individual patients and publicity campaigns promoting the uptake of emergency contraception.

Recently, Scambler and others have broadened the research agenda on stigma to include the wider meanings of stigma within society, and especially the role of identity politics e.g. gay liberation. Recognising that the categories 'homosexual' and 'depression' were socially constructed and stigmatised from the 19 th and 20 th centuries respectively, we draw on themes in conceptual models of coming out as gay or lesbian to sensitise our analysis to personal experiences of depression and the specific ways in which the condition is constructed. Thirty-eight narrative interviews with people in the UK in various stages of recovery from depression were analysed comparing themes to a 'coming out' framework. The applicability of coming out themes to understanding the construction of depression was evident. Themes included childhood difference; confusion; the depression closet; challenging stigma via the biology vs. nurture debate; re-casting depression as commonplace or even fashionable; contending with a shame-pride narrative; coming out and, finally, integrating the depression experience. By comparing 'coming out' themes with depression experience in detail for the first time, we illuminate how people understand depression, cope with and resist stigma, thus providing insights into the contemporary situation in Western societies for those facing depression. © 2011 Foundation for the Sociology of Health and Illness/Blackwell Publishing Ltd.

Purpose: – The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes. Design/methodology/approach: – A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts. Findings: – Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became “experts by experience” through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes. Research limitations/implications: – The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design. Practical implications: – Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement. Social implications: – Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers. Originality/value: – Analysis of the role patients and carers in implementation and improvement.

Item does not contain fulltext CONTEXT: The use of the Internet for peer-to-peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients' accounts of their experiences with health and health care, which includes the development and validation of a new e-health impact questionnaire. METHODS: We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel. FINDINGS: We identified seven domains through which online patients' experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources. CONCLUSIONS: The value of first-person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others' accounts of their own experiences of health and illnesss will remain a key feature of e-health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients' experiences and has implications for our understanding of their role in their own health care management and information.

Background Colorectal cancer is the third most common cancer in the UK. Patients with colorectal cancer spend most of their time in the community, but the role of primary care in their management and follow-up is unclear. Aim To explore colorectal cancer patients9 experiences of psychosocial problems and their management in primary and specialist care. Design and setting Longitudinal qualitative study of participants recruited from three hospitals in the west of Scotland and interviewed in their own homes. Method In-depth interviews with 24 participants with a new diagnosis of colorectal cancer, and then follow-up interviews 12 months later. Results Participants9 needs following a diagnosis for colorectal cancer included physical, psychological, and social issues. GPs played a key role in diagnosis, after which they were less involved. Participants valued GPs making unsolicited contact and offering support. Participants described being well supported by clinical nurse specialists who are expert in the illness, and who provide continuity of care and psychological support. A year after diagnosis, when there was less contact with GPs and clinical nurse specialists, participants still faced challenges associated with the ongoing impact of colorectal cancer Conclusion While some patients enjoyed straightforward recoveries from surgery, others experienced longer-term implications from their disease and treatment, particularly bowel-function issues, fatigue, anxiety, and sexual problems. The potential for primary care to contribute more to the ongoing care of colorectal cancer patients was identified.

Objective: This article explores how people with pancreatic cancer interpreted prediagnostic signs and symptoms, and what triggered them to seek medical help for symptoms that occurred intermittently. Design: Thematic analysis of prediagnostic symptom descriptions drawn from a qualitative interview study of people with experiences of pancreatic cancer. Participants: 40 people affected by pancreatic cancer (32 patients and 8 relatives of people who had died). Age at interview ranged from 35 to 84 years; 55% were men; and 57.5% of patients had been offered potentially curative surgery. Setting: Respondents interviewed at home were recruited from different parts of the UK during 2009/ 2010. Results: Analysis of the interviews suggested that intermittent symptoms were not uncommon in the months, or even years, before diagnosis but that the fact that the symptom did not persist was often taken by the patient as a reassuring indicator that it could not be 'very important'. Such symptoms were rarely acted upon until a pattern became apparent, the frequency of symptom episodes increased, there was a change in the nature of the intermittent symptoms or additional symptom(s) appeared. These findings build on social science theories of consultation behaviour. Conclusions: Our study - the largest reported collection of qualitative interviews with people with pancreatic cancer - reports for the first time that symptoms of an intermittent nature may precede a pancreatic cancer diagnosis. Patients (and potentially their doctors as well) may be falsely reassured by symptoms that come and go. Pancreatic cancer might be identified at a stage where curative treatment is more likely if there were greater awareness that intermittent gastrointestinal symptoms can have a serious cause, and if patients with intermittent pancreatitis-like symptoms were investigated more readily.

Item does not contain fulltext OBJECTIVE: to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality. DESIGN: secondary analysis of qualitative narrative interview data informed by a critical realist approach. SETTING: respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005. PARTICIPANTS: twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others. FINDINGS: few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks because of expectations about how men 'should' deal with emotions. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: midwives have to make difficult judgements about what, how and when to provide information when trying to support and advise parents who have ended a pregnancy due to fetal abnormality. Further education and training in this area could be of benefit. Midwives could signpost parents to existing sources of advice around disclosure, taking into account parents' individual preferences, help parents to consider the potential implications of disclosure and concealment and different ways of disclosing. They could also recommend alternative sources of emotional support, bearing in mind that men in particular may find it harder to access support from their social networks.

Patients with chronic lymphocytic leukaemia (CLL) find it hard to accept a diagnosis of an incurable cancer for which no treatment is recommended and which may not cause symptoms for many years. We used qualitative interviews with 12 people with CLL managed by watchful waiting, drawn from a maximum variation sample of 39 adults with leukaemia, to explore accounts of watchful waiting and implications for clinical management. Patients with CLL recalled being given little information about the condition and wanted to know more about how it might affect them in the future. The invisibility of CLL meant that some chose not to disclose the diagnosis to others. Check-ups sometimes felt cursory, causing dissatisfaction. As symptoms increased, lifestyle adaptations became essential, well before treatment was warranted. Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts. We relate our findings to perceptions of the illness state, doctor-patient communication, and work pressure. We recommend that specialists could better support patients by acknowledging psychological impacts of CLL, actively listening to patients' concerns, and meeting their needs for information.

OBJECTIVE: Initial analysis of an interview study with patients about their experiences of lymphoma identified a strong emergent theme suggesting people were surprised to receive good care in the UK National Health Service. This qualitative analysis helps illuminate the disparity between public perceptions of NHS care and individual experiences. PARTICIPANTS AND SETTING: Forty-one women and men with lymphoma were interviewed at home by an academic social scientist; nine who had had all their treatment before 1997 were excluded from this analysis. DESIGN: Initial qualitative thematic analysis used constant comparison and axial coding. Using narrative analytic methods, we explored how the accounts of positive experiences were structured and framed as well as what was said. RESULTS: Every person we interviewed described positive experiences of the NHS. These included the skills and humanity of the specialist staff involved in their care, the team work, the organization of care and communication and information. However, these positive experiences were often framed as personal good fortune rather than an indication that a high standard might be expected of NHS cancer care. Participants' accounts also suggest a discrepancy through the use of framing devices that imply that less professional, kind and caring treatment might be expected. CONCLUSION: People may be able to maintain the apparently contradictory opinions that the NHS is not very good, even if their own experience of care is excellent, if they construct their own experience as 'lucky'. Health professionals could help by reassuring patients with a more positive, realistic expectation of specialist care.