Julia Hiscock

Attitudes to the public release of comparative information on the quality of general practice care: qualitative study.

Abstract Objectives: To examine the attitudes of service users, general practitioners, and clinical governance leads based in primary care trusts to the public dissemination of comparative reports on quality of care in general practice, to guide the policy andpractice of public disclosure of information in primary care. Design: Qualitative focus group study using mock quality report cards as prompts for discussion. Setting: 12 focus groups held in an urban area in north west England and a semirural area in the south of England. Participants: 35 service users, 24 general practitioners, and 18 clinical governance leads. Results:There was general support for the principle of publishing comparative information, but all three stakeholder groups expressed concerns about the practicalimplications. Attitudes were strongly influenced by experience of comparative reports from other sectors—for example, school league tables. Service users distrusted what they saw as the political motivation driving the initiative, expressed a desire to “protect” their practices from political and managerial interference, and were uneasy about practices being encouraged to compete against each other. General practitioners focused on the unfairness of drawing comparisons from current data and the risks of “gaming” the results. Clinical governance leads thought that public disclosure would damage their developmental approach to implementing clinical governance. The initial negative response to the quality reports seemed to diminish on reflection. Conclusions: Despite support for the principle of greater openness, the planned publication of information about quality of care in general practice is likely to face considerable opposition, not only from professional groups but also from the public. A greater understanding of the practical implications of public reporting is required before the potential benefits can be realised.

Considering the case for an antidepressant drug trial involving temporary deception: a qualitative enquiry of potential participants

BackgroundSystematic reviews of randomised placebo controlled trials of antidepressant medication show small and decreasing differences between pharmacological and placebo arms. In part this finding may relate to methodological problems with conventional trial designs, including their assumption of additivity between drug and placebo trial arms. Balanced placebo designs, which include elements of deception, may address the additivity question, but pose substantial ethical and pragmatic problems. This study aimed to ascertain views of potential study participants of the ethics and pragmatics of various balanced placebo designs, in order to inform the design of future antidepressant drug trials.MethodsA qualitative approach was employed to explore the perspectives of general practitioners, psychiatrists, and patients with experience of depression. The doctors were chosen via purposive sampling, while patients were recruited through participating general practitioners. Three focus groups and 12 in-depth interviews were conducted. A vignette-based topic guide invited views on three deceptive strategies: post hoc, authorised and minimised deception. The focus groups and interviews were tape-recorded and transcribed. Transcripts were analysed thematically using Framework.ResultsDeception in non-research situations was typically perceived as acceptable within specific parameters. All participants could see the potential utility of introducing deception into trial designs, however views on the acceptability of deception within antidepressant drug trials varied substantially. Authorized deception was the most commonly accepted strategy, though some thought this would reduce the effectiveness of the design because participants would correctly guess the deceptive element. The major issues that affected views about the acceptability of deception studies were the welfare and capacity of patients, practicalities of trial design, and the question of trust.ConclusionThere is a trade-off between pragmatic and ethical responses to the question of whether, and under what circumstances, elements of deception could be introduced into antidepressant drug trials. Ensuring adequate ethical safeguards within balanced placebo designs is likely to diminish their ability to address the crucial issue of additivity. The balanced placebo designs considered in this study are unlikely to be feasible in future trials of antidepressant medication. However there remains an urgent need to improve the quality of antidepressant drug trials.

Social Policy in a Fast‐growing Economy: The Case of Chile

Chile has adopted a package of free-market, neo-liberal social policies. This follows a pattern established by the country’s largely successful economic policies. Neo-liberal social policy consists of a series of two-tier systems, which are not in contradiction with the economic model. On the contrary, a key function of the social policies is to supplement a dynamic style of capitalist economic development through a number of mechanisms. These include: improving the skills, education and health standards of the labour force; increasing savings in a privately-run pension system; reducing labour costs to firms; and providing a safety net to those whom the “trickle down” does not reach. The paper examines social policy in three sectors: pensions, health and education. It explores historical roots, present characteristics, and the degree of success or othewise of policy in these sectors. The discussion refers to the role played by the legacy of the Pinochet military dictatorship (1973–90), the interface between public and private spheres, the whole question of social policy in the context of fast economic growth under free-market conditions (and the possible presence of causality links), the changing balance of power between suppliers and users of social sector services in favour of the latter, the threat of market failure, and questions such as whether these policies have been successful and whether (or why) Chileans are prepared to accept this unequal two-tier system.

Perceptions of risk as a barrier to the use of telemedicine

There is little published information about the perceptions of risk in the use of telemedicine services. The present study drew on data from two separate research projects. The data comprised interviews with health professionals, technologists, managers and patient advocates involved in telemedicine. The interviews were recorded, transcribed and analysed thematically. Key themes included the need to balance risks against potential benefits and the suggestion that risk was a method of resisting change. Another theme was trust, both in health professionals and the technology itself. It appears that risk management issues may be an important barrier to the implementation of telemedicine services.

Talking about human papillomavirus and cancer: protocol for a patient- centred study to develop scripted consultations

Introduction Persistent infection with sexually transmitted, high-risk human papillomavirus (HPV) types is the cause of all cervical cancers and some anogenital and oropharyngeal cancers. HPV is an extremely common asymptomatic infection but little known and poorly understood by the public. Patients with HPV-related cancers have new and challenging information needs due to the complex natural history of HPV and the stigma of sexual transmission. They may ask questions that are outside the remit of the traditional cancer consultation, and there is a lack of guidance on how to counsel them. This study aims to fulfil that need by developing and testing cancer site-specific scripted consultations. Methods and analysis A synthesis of findings generated from previous work, a systematic review of information-based interventions for patients with HPV-related cancers, and interviews with cancer clinicians will provide the evidence base underpinning provisional messages. These will be explored in three phases of face-to-face interviews with 75–90 purposively selected patients recruited in cancer clinics to: (1) select and prioritise the most salient messages, (2) phrase the messages appropriately in plain English and, (3) test their acceptability and usefulness. Phases 1 and 2 will draw on card-sorting methods used in website design. In phase three, we will create cancer site-specific versions of the script and test them using cognitive interviewing techniques. Ethics and dissemination The study has received ethical approval. Findings will be published in a peer-reviewed journal. The final product will be cancer-specific scripted consultations, most likely in the form of a two-sided information sheet with the most important messages to be conveyed in a consultation on one side, and frequently asked questions for later reading on the reverse. However, they will also be appropriate and readily adaptable to web-based uses.

Complexity in simple tasks: a qualitative analysis of GPs’ completion of long-term incapacity forms

Aim: To explore the factors influencing the completion of the IB113 form for the Department for Work and Pensions (DWP), as an exemplar of how general practitioners (GPs) manage and report patient information to external bodies. Background: In UK, GPs complete IB113 forms for their patients approaching longer-term sickness absence, who may be exempt from the incapacity benefit linked medical examination. The DWP has expressed concerns about the quality of such reports, and GP organizations have raised objections to completing such forms. The content of returned forms is variable, and may be subject to a number of influences. Design: Qualitative interviews with purposive sampling of GPs and practice managers (PMs). Setting: Primary Care practices in the North East of England. Method: GPs and PMs were interviewed using a semi-structured topic guide about completing IB113 forms for the DWP about their patients entering long-term incapacity. The transcribed data were analysed thematically using the framework analysis method. Results: Whilst the IB113 appears superficially straightforward to complete, our results demonstrate levels of overlapping complexity that add ranges of subjectivity and selectivity onto factual reporting, including practice protocols, the gathering and managing of information, the doctor–patient relationship, and doctor’s personal views on systems. Conclusions: The recording and reporting of patient related data by GPs is subject to complex influences, which need to be understood and managed to improve the relevance and quality of reports to third parties.

Talking about human papillomavirus and cancer: development of consultation guides through lay and professional stakeholder coproduction using qualitative, quantitative and secondary data

Background High-risk human papillomaviruses (HPVs) cause all cervical cancer and the majority of vulvar, vaginal, anal, penile and oropharyngeal cancers. Although HPV is the most common sexually transmitted infection, public awareness of this is poor. In addition, many clinicians lack adequate knowledge or confidence to discuss sexual transmission and related sensitive issues. Complex science needs to be communicated in a clear, digestible, honest and salient way. Therefore, the aim of this study was to coproduce with patients who have cancer appropriate resources to guide these highly sensitive and difficult consultations. Methods A matrix of evidence developed from a variety of sources, including a systematic review and telephone interviews with clinicians, supported the production of a draft list of approximately 100 potential educational messages. These were refined in face-to-face patient interviews using card-sorting techniques, and tested in cognitive debrief interviews to produce a ‘fast and frugal’ knowledge tool. Results We developed three versions of a consultation guide, each comprising a clinician guidance sheet and patient information leaflet for gynaecological (cervical, vaginal, vulvar), anal or oropharyngeal cancers. That cancer could be caused by a sexually transmitted virus acquired many years previously was surprising to many and shocking to a few patients. However, they found the information clear, helpful and reassuring. Clinicians acknowledged a lack of confidence in explaining HPV, welcomed the clinician guidance sheets and considered printed information for patients particularly useful. Conclusion Because of the ‘shock factor’, clinicians will need to approach the discussion of HPV with sensitivity and take individual needs and preferences into account, but we provide a novel, rigorously developed and tested resource which should have broad applicability in the UK National Health Service and other health systems.

A pilot randomised controlled trial of personalised care after treatment for prostate cancer (TOPCAT-P): nurse-led holistic-needs assessment and individualised psychoeducational intervention: study protocol

Introduction Prostate cancer is common and the incidence is increasing, but more men are living longer after diagnosis, and die with their disease rather than of it. Nonetheless, specific and substantial physical, sexual, emotional and mental health problems often lead to a poor quality of life. Urology services increasingly struggle to cope with the demands of follow-up care, and primary care is likely to play the central role in long-term follow-up. The present phase II trial will evaluate the feasibility and acceptability of a nurse-led, person-centred psychoeducational intervention, delivered in community or primary care settings. Methods and analysis Prostate cancer survivors diagnosed in the past 9–48 months and currently biochemically stable will be identified from hospital records by their treating clinician. Eligible men would have either completed radical treatment, or would be followed up with prostate specific antigen monitoring and symptom reporting. We will recruit 120 patients who will be randomised to receive either an augmented form of usual care, or an additional nurse-led intervention for a period of 36 weeks. Following the health policy in Wales, the intervention is offered by a key worker, is promoting prudent healthcare and is using a holistic needs assessment. Outcome measures will assess physical symptoms, psychological well-being, confidence in managing own health and quality of life. Healthcare service use will be measured over 36 weeks. Feedback interviews with patients and clinicians will further inform the acceptability of the intervention. Recruitment, attrition, questionnaire completion rates and outcome measures variability will be assessed, and results will inform the design of a future phase III trial and accompanying economic evaluation. Ethics and dissemination Ethics approval was granted by Bangor University and North Wales REC (13/WA/0291). Results will be reported in peer-reviewed publications, at scientific conferences, and directly through national cancer and primary care networks. Trial registration number ISRCTN 34516019.

‘Carrying on the way we are is becoming shambolic’ – An interview study with prostate cancer specialists about their usual practice of follow-up

Aim: This study aims to clarify what practice for the follow-up of prostate cancer is occurring at present and to explain the reasons behind any variation. Background: Prostate cancer has been increasing in incidence in the UK for several years. It has been suggested that men with prostate cancer could be better managed, and that some aspects of care are duplicated by primary and secondary care professionals. Methods: This study aimed to interview the prostate cancer specialists identified as working within the district general hospitals of a large health board. The interviews used a qualitative semi-structured approach. Analysis was performed using The Framework method. Findings: Current practice for the follow-up of prostate cancer is variable both within and between hospitals. Patients are followed up in secondary care for longer than National Institute for Health and Care Excellence (NICE) recommends due to a lack of trust of general practitioners’ management. This inevitably impacts upon waiting lists, and many patients’ appointments are long overdue. A remote prostate-specific antigen (PSA) surveillance system may be beneficial. It is generally thought that change to the usual practice of follow-up of prostate cancer patients is required.

Development of an intervention to expedite cancer diagnosis through primary care: a protocol

Background GPs can play an important role in achieving earlier cancer diagnosis to improve patient outcomes, for example through prompt use of the urgent suspected cancer referral pathway. Barriers to early diagnosis include individual practitioner variation in knowledge, attitudes, beliefs, professional expectations, and norms. Aim This programme of work (Wales Interventions and Cancer Knowledge about Early Diagnosis [WICKED]) will develop a behaviour change intervention to expedite diagnosis through primary care and contribute to improved cancer outcomes. Design & setting Non-experimental mixed-method study with GPs and primary care practice teams from Wales. Method Four work packages will inform the development of the behaviour change intervention. Work package 1 will identify relevant evidence-based interventions (systematic review of reviews) and will determine why interventions do or do not work, for whom, and in what circumstances (realist review). Work package 2 will assess cancer knowledge, attitudes, and behaviour of GPs, as well as primary care teams’ perspectives on cancer referral and investigation (GP survey, discrete choice experiment [DCE], interviews, and focus groups). Work package 3 will synthesise findings from earlier work packages using the behaviour change wheel as an overarching theoretical framework to guide intervention development. Work package 4 will test the feasibility and acceptability of the intervention, and determine methods for measuring costs and effects of subsequent behaviour change in a randomised feasibility trial. Results The findings will inform the design of a future effectiveness trial, with concurrent economic evaluation, aimed at earlier diagnosis. Conclusion This comprehensive, evidence-based programme will develop a complex GP behaviour change intervention to expedite the diagnosis of symptomatic cancer, and may be applicable to countries with similar healthcare systems.