Multidisciplinary team decision-making in cancer and the absent patient: a qualitative study.

OBJECTIVE: To critically examine the process of multidisciplinary team (MDT) decision-making with a particular focus on patient involvement. DESIGN: Ethnographic study using direct non-participant observation of 35 MDT meetings and 37 MDT clinics, informal interviews and formal, semistructured interviews with 20 patients and 9 MDT staff members. SETTING: Three head and neck cancer centres in the north of England. PARTICIPANTS: Patients with a diagnosis of new or recurrent head and neck cancer and staff members who attend the head and neck cancer MDT. RESULTS: Individual members of the MDT often have a clear view of which treatment they consider to be 'best' in any clinical situation. When disagreement occurs, the MDT has to manage how it presents this difference of opinion to the patient. First, this is because the MDT members recognise that the clinician selected to present the treatment choice to the patient may 'frame' their description of the treatment options to fit their own view of best. Second, many MDT members feel that any disagreement and difference of opinion in the MDT meeting should be concealed from the patient. This leads to much of the work of decision-making occurring in the MDT meeting, thus excluding the patient. MDT members seek to counteract this by introducing increasing amounts of information about the patient into the MDT meeting, thus creating an 'evidential patient'. Often, only highly selected or very limited information of this type can be available or known and it can easily be selectively reported in order to steer the discussion in a particular direction. CONCLUSIONS: The process of MDT decision-making presents significant barriers to effective patient involvement. If patients are to be effectively involved in cancer decision-making, the process of MDT decision-making needs substantial review.

Risk communication in the hyperacute setting of stroke thrombolysis: an interview study of clinicians.

OBJECTIVE: Communicating treatment risks and benefits to patients and their carers is central to clinical practice in modern healthcare. We investigated the challenges of risk communication by clinicians offering thrombolytic therapy for hyperacute stroke where treatment must be administered rapidly to maximise benefit. METHOD: Semistructured interviews with 13 clinicians from three acute stroke units involved in decision making and/or information provision about thrombolysis. We report on clinicians' accounts of communicating risks and benefits to patients and carers. Framework analysis was employed. RESULTS: We identified the major challenges facing clinicians in communicating risk in this context that is, disease complexity, patients' capacity and time constraints, and communicating quality of life after stroke. We found significant variation in the data on risks and benefits that clinicians provide, and ways these were communicated to patients. Clinicians' communication strategies varied and included practices such as: a phased approach to communicating information, being responsive to the patient and family and documenting information they gave to patients. CONCLUSIONS: Risk communication about thrombolysis involves complex uncertainties. We elucidate the challenges of effective risk communication in a hyperacute setting and identify the issues regarding variation in risk communication and the use of less effective formats for the communication of numerical risks and benefits. The paper identifies good practice, such as the phased transfer of information over the care pathway, and ways in which clinicians might be supported to overcome challenges. This includes standardised risk and benefit information alongside appropriate personalisation of risk communication. Effective risk communication in emergency settings requires presentation of high-quality data which is amenable to tailoring to individual patients' circumstances. It necessitates clinical skills development supported by personalised risk communication tools.

Trends in healthcare incident reporting and relationship to safety and quality data in acute hospitals: results from the National Reporting and Learning System.

BACKGROUND: Internationally, there is increasing recognition of the need to collect and analyse data on patient safety incidents, to facilitate learning and develop solutions. The National Patient Safety Agency (NPSA) for England and Wales has been capturing incident data from acute hospitals since November 2003. OBJECTIVES: This study analyses patterns in reporting of patient safety incidents from all acute hospitals in England to the NPSA National Reporting and Learning System, and explores the link between reporting rates, hospital characteristics, and other safety and quality datasets. METHODS: Reporting rates to the NPSA National Reporting and Learning System were analysed as trends over time, from the point at which each hospital became connected to the system. The relationships between reporting rates and other safety and quality datasets were assessed using correlation and regression analyses. RESULTS: Reporting rates increased steadily over the 18 months analysed. Higher reporting rates correlated with positive data on safety culture and incident reporting from the NHS Staff Survey, and with better risk-management ratings from the NHS Litigation Authority. Hospitals with higher overall reporting rates had a lower proportion of their reports in the "slips, trips and falls" category, suggesting that these hospitals were reporting higher numbers of other types of incident. There was no apparent association between reporting rates and the following data: standardised mortality ratios, data from other safety-related reporting systems, hospital size, average patient age or length of stay. CONCLUSIONS: Incident reporting rates from acute hospitals increase with time from connection to the national reporting system, and are positively correlated with independently defined measures of safety culture, higher reporting rates being associated with a more positive safety culture.

Patient decision aids in joint replacement surgery: a literature review and an opinion survey of consultant orthopaedic surgeons.

INTRODUCTION: Patient decision aids could facilitate shared decision-making in joint replacement surgery. However, patient decision aids are not routinely used in this setting. METHODS: With a view to developing a patient decision aid for UK hip/knee joint replacement practice, we undertook a systematic search of the literature for evidence on the use of shared decision-making and patient decision aids in orthopaedics, and a national survey of consultant orthopaedic surgeons on the potential acceptability and feasibility of patient decision aids. RESULTS: We found little published evidence regarding shared decision-making or patient decision aids in orthopaedics. In the survey, 362 of 639 (57%) randomly selected consultant orthopaedic surgeons responded. Respondents appear representative of consultant orthopaedic surgeons in the UK. Of 272 valid responses, 79% (95% CI, 73-85%) thought patient decision aids a good or excellent idea. There was consensus on the potential helpfulness of patient decision aids and core content. A booklet to take home was the preferred medium/practice model. CONCLUSIONS: Despite the increased emphasis on patient involvement in decision-making, there is little evidence in the medical literature relating to shared decision-making or the use of patient decision aids in orthopaedic surgery. Further research in this area of clinical practice is required. Our survey shows that consultant orthopaedic surgeons in the UK are generally positive about the use of patient decision aids for joint replacement surgery. Survey results could inform future development of patient decision aids for joint replacement practice in the UK.

Decision support for women choosing mode of delivery after a previous caesarean section: a developmental study.

OBJECTIVE: To examine the impact of a decision support intervention designed for women choosing mode of delivery after one previous caesarean section. METHODS: A decision support intervention was developed comprising of an informational DVD/video and a home visit by a midwife. 16 women received standard clinical care and 16 women additionally received the intervention. Pilot questionnaire data was collected at 12, 28 and 37 weeks gestation from all participants. 18 of the 32 participants also participated in semi-structured interviews after they had decided mode of delivery at 37 weeks gestation. RESULTS: Four themes were identified in the qualitative data relating to decision-making: informational support, emotional support, participation and involvement in decision-making, and the way in which decision support was used. CONCLUSION: The difficulties experienced by women in this decision-making scenario were confirmed. The intervention was welcomed by the participants and both qualitative and quantitative findings suggest the intervention improved decision-making experiences. PRACTICE IMPLICATIONS: This intervention offers an accessible method of decision support which effectively targets the needs of women choosing mode of delivery after a previous caesarean delivery. Using easily reproducible informational materials, and the pre-existing skills of midwives, it would be relatively straightforward to introduce this intervention into current clinical practice.

Qualitative methods in a randomised controlled trial: the role of an integrated qualitative process evaluation in providing evidence to discontinue the intervention in one arm of a trial of a decision support tool.

OBJECTIVE: To understand participants' experiences and understandings of the interventions in the trial of a computerised decision support tool in patients with atrial fibrillation being considered for anti-coagulation treatment. DESIGN: Qualitative process evaluation carried out alongside the trial: non-participant observation and semistructured interviews. PARTICIPANTS: 30 participants aged >60 years taking part in the trial of a computerised decision support tool. RESULTS: Qualitative evidence provided the rationale to undertake a decision to discontinue one arm of the trial on the basis that the intervention in that arm, a standard gamble values elicitation exercise was causing confusion and was unlikely to produce valid data on participant values. CONCLUSIONS: Qualitative methods used alongside a trial allow an understanding of the process and progress of a trial, and provide evidence to intervene in the trial if necessary, including evidence for the rationale to discontinue an intervention arm of the trial.

Flexible therapeutic landscapes of labour and the place of pain relief.

Flexibility in the design and enactment of spaces of healthcare is important in how providers respond to variations in patient expectations and experience. Health geographers have contributed to a wide body of literature concerning the therapeutic qualities of landscapes and the material, social and symbolic orderings of place and their uniqueness for individuals. In this paper, we draw upon these findings and a 'culture of place' approach to consider the complexities of maternity care and issues of pain relief. Given that pain is widely held to be a subjective experience and one that, in an era of patient decision making, increasingly demands discretionary approaches to its relief, we consider how medical professionals help to construct flexibility in healthcare and how this affects therapeutic landscapes. Drawing on analysis of four focus groups involving parent educators, midwives, health visitors, anaesthetists and obstetricians in the NE of England, we explore the material and discursive construction of flexible therapeutic landscapes and pain relief. Our findings suggest that flexibility is constrained and fashioned in association with health care professional's sense of place as already constituted. We propose that providing maternity care professionals with an explicit awareness of how places are relationally constructed, may help in expanding the therapeutic qualities of particular settings, and support a (more) flexible approach.

How do newly diagnosed hypertensives understand 'risk'? Narratives used in coping with risk.

BACKGROUND: In many clinical settings, there are concerns about communicating risk effectively in the absence of a clear understanding of what risk means to individuals. OBJECTIVES: To explore the ways in which individuals think about risk in the context of a recent diagnosis of hypertension. METHODS: A qualitative interview study of 11 recently diagnosed hypertensive patients recruited from general practice. RESULTS: Participants presented a 'narrative' about their relationship to risk. Two general types of risk narrative were evident: 'denial' narratives and 'acceptance' narratives (though some examples fall along the spectrum in between). The 'deniers' described risk as something they do not think about, or as applying to others but not themselves. The 'acceptors' described risk as an unavoidable part of everyday life. The use of a 'denial' or 'acceptance' narrative appeared to be independent of the level of understanding of evidence-based hypertension medical risks. Some participants who used a denial narrative also described taking a variety of risk-reducing actions in relation to the new diagnosis. For some people the distancing of risk achieved by the narrative seems to be an important way of coping. CONCLUSIONS: Participants described risk by way of a personal narrative, which functioned as a coping position. The coping position adopted did not presuppose either levels of knowledge, or health-related behaviour. In communicating information about risk, practitioners need to be aware of the use of coping narratives; 'denial' does not necessarily imply lack of understanding or unwillingness to take medically appropriate health-related actions.

Using routine comparative data to assess the quality of health care: understanding and avoiding common pitfalls.

Measuring the quality of health care has become a major concern for funders and providers of health services in recent decades. One of the ways in which quality of care is currently assessed is by taking routinely collected data and analysing them quantitatively. The use of routine data has many advantages but there are also some important pitfalls. Collating numerical data in this way means that comparisons can be made--whether over time, with benchmarks, or with other healthcare providers (at individual or institutional levels of aggregation). Inevitably, such comparisons reveal variations. The natural inclination is then to assume that such variations imply rankings: that the measures reflect quality and that variations in the measures reflect variations in quality. This paper identifies reasons why these assumptions need to be applied with care, and illustrates the pitfalls with examples from recent empirical work. It is intended to guide not only those who wish to interpret comparative quality data, but also those who wish to develop systems for such analyses themselves.

Clinical features and natural history of progressive supranuclear palsy: a clinical cohort study.

OBJECTIVE: To describe clinical features and identify prognostic predictors in progressive supranuclear palsy (PSP). METHODS: Record-based diagnosis according to National Institute of Neurological Disorders and Stroke-Society for Progressive Supranuclear Palsy criteria was performed in 187 cases of PSP. Clinical information was abstracted from patient records. Sixty-two patients (33%) were examined by the investigators. Forty-nine of 62 patients (79%) underwent standardized clinical assessment. Predictors of survival were examined after a mean of 6.4 years. RESULTS: The most common symptoms at disease onset related to mobility (69%). Of patients undergoing standardized clinical assessment, diplopia occurred in 61%, photophobia in 43%, and eyelid apraxia in 43%. Seventy-five cases (40%) died during follow-up. Older age at onset and classification as probable PSP were associated with poorer survival. Onset of falls (hazard ratio 3.28, 95% CI 1.17 to 9.13), speech problems (hazard ratio 4.74, 95% CI 1.10 to 20.4), or diplopia (hazard ratio 4.23, 95% CI 1.23 to 14.6) within 1 year and swallowing problems within 2 years (hazard ratio 3.91, 95% CI 1.39 to 11.0) were associated with a worse prognosis. CONCLUSIONS: Mobility problems are the commonest early feature in PSP and visual symptoms are often functionally disabling. Early falls, speech and swallowing problems, diplopia, and early insertion of a percutaneous gastrostomy predict reduced survival.

The prevalence of progressive supranuclear palsy (Steele-Richardson-Olszewski syndrome) in the UK.

We performed a study to estimate the point prevalence of progressive supranuclear palsy (PSP) in the UK at national, regional and community levels. A 'Russian doll' design was used in which the population denominator for each of the three studies was successively smaller, whilst the method of case ascertainment became increasingly more rigorous. The NINDS-SPSP (National Institute of Neurological Disorders and the Society for Progressive Supranuclear Palsy) diagnostic criteria for PSP were applied throughout the study for case definition. The national study identified cases using passive referral mechanisms [e.g. the British Neurological Surveillance Unit (BNSU), PSP (Europe) Association patient register]. We identified 577 cases of PSP, giving a national prevalence estimate of 1.0 per 100 000 [95% confidence interval (CI) 0.9-1.1]. The North of England regional study used active 'multiple source' case ascertainment from a collaborative network of neurologists and non-neurologists. We identified 80 cases of PSP in this study, giving a crude and age-adjusted prevalence of 3.1 (95% CI 2.4-3.8) and 2.4 (1.9-3.0) per 100 000, respectively. Of these 80 cases, 51 patients (65%) were referred initially to non-neurologists and 10 patients (13%) had not seen a neurologist at any stage of their illness. The proportion of female cases was significantly greater in the regional than in the national study (61% versus 44%; P < 0.02). Cases referred to non-neurologists were significantly older than those referred to neurologists in the regional study (median age 73 versus 69.5 years; P < 0.01). Patients in the community study were identified via diagnostic and therapeutic registers from a representative sample of general practices in Newcastle upon Tyne. We identified 17 cases of PSP, yielding crude and age-adjusted prevalences of 6.5 (95% CI 3.4-9.7) and 5.0 (95% CI 2.5-7.5) per 100 000, respectively. Seven of the 17 cases (41%) had not previously been diagnosed as PSP. This study suggests that PSP is more common than previously considered, is commonly misdiagnosed and that the majority of cases are not initially referred to neurologists. The study also confirms the importance of active and detailed case ascertainment in ensuring reliable prevalence estimates.

The potential use of decision analysis to support shared decision making in the face of uncertainty: the example of atrial fibrillation and warfarin anticoagulation.

The quality of patient care is dependent upon the quality of the multitude of decisions that are made daily in clinical practice. Increasingly, modern health care is seeking to pursue better decisions (including an emphasis on evidence-based practice) and to engage patients more in decisions on their care. However, many treatment decisions are made in the face of clinical uncertainty and may be critically dependent upon patient preferences. This has led to attempts to develop decision support tools that enable patients and clinicians to make better decisions. One approach that may be of value is decision analysis, which seeks to create a rational framework for evaluating complex medical decisions and to provide a systematic way of integrating potential outcomes with probabilistic information such as that generated by randomised controlled trials of interventions. This paper describes decision analysis and discusses the potential of this approach with reference to the clinical decision as to whether to treat patients in atrial fibrillation with warfarin to reduce their risk of stroke.

A regional collaborative audit of the practice and outcome of carotid endarterectomy in the United Kingdom. Northern Regional Carotid Endarterectomy Audit Group.

OBJECTIVES: To evaluate performance and outcome of carotid endarterectomy (CEA) against agreed audit standards within one English health region. Design a prospective collaborative audit over twelve months (November 1994 to October 1995) involving all surgeons undertaking CEA within one English health region. METHODS: Audit standards were agreed by all participating surgeons at the outset based on existing national guidelines. Data were abstracted from clinical notes. Outcomes were reviewed by clinicians 30 days post-surgery. A confidential individualised report of the results was provided to each surgeon. A survey of participating surgeons sought to evaluate the audit process. RESULTS: Ten surgeons performed 139 CEAs on 134 individuals (64% men). Median per surgeon was 12 (range 1-44). Audit standards were generally achieved: 114 (82%) patients had symptomatic carotid stenosis of 70-99%, 14 (10%) were asymptomatic. The median time from first referral to hospital to operation was 4.8 months (interquartile range 3.0-7.3). The rate of disabling stroke or death at 30 days was 2.2% (95% confidence interval (CI) 0.4-6.4%). Surgeons valued the audit. CONCLUSIONS: The study showed that in the study area CEA was performed predominantly on high-risk patients with low subsequent surgical mortality.

The prevalence of stroke and associated disability.

BACKGROUND: There are limited data available on the prevalence of stroke in the United Kingdom. Such data are important for the assessment of the health needs of the population. This study aimed to determine the prevalence of stroke and the prevalence of associated dependence in a district of northern England. METHODS: This was a two-stage point prevalence study. A valid screening questionnaire was used to identify stroke survivors from an age- and sex-stratified sample of the population aged 45 years and over in a family health services authority district. This was followed by assessment of stroke patients with scales of disability and handicap. RESULTS: The overall prevalence of stroke was found to be 17.5/1000 (95 per cent confidence interval (CI) 17.0, 18.0). The prevalence of stroke-associated dependence was 11.7/1000 (95 per cent CI 11.3, 12.1). Self-reported comorbidity was most commonly due to circulatory and musculoskeletal disorders. CONCLUSIONS: The prevalence of stroke in this district is considerably higher than current guidelines and previous results suggest. Nevertheless, the result from this study combined with that from a previous study in another district in the United Kingdom should allow those interested in epidemiologically based health needs assessment to make reasonable estimates of the burden of stroke in their area.

Are variations in the use of carotid endarterectomy explained by population Need? A study of health service utilisation in two English health regions.

OBJECTIVES: to describe variation in utilisation of carotid endarterectomy (CEA) within two English health regions and explore relationships between use, need and proximity to services. DESIGN: consecutive case series of operations. Comparison at a population level with district stroke mortality, hospital admissions and material deprivation. MAIN OUTCOME MEASURES: standardised utilisation rates for CEA and measures of inter-district variability. Spearman's rank correlation coefficients for associations between variables. RESULTS: variation in utilisation rates was considerable (14-fold difference across district populations). More individuals had bilateral surgery in the Yorkshire region than in the Northern (11.7% vs. 5.5%, p=0.002). There was no association between utilisation rates for CEA and district stroke mortality (r=-0.06, 95% CI -0.41 to 0.30) or admission rates for stroke (r=0.17, 95% CI -0.2 to 0.49). There was a strong relationship between residence in districts where services were located and higher utilisation. Rates of CEA were lowest in the regions' most affluent wards. CONCLUSION: use of CEA varies widely, depending on area of residence. Variation is not a consequence of differences in need, but reflects clinical practice and supply of services. There is evidence to suggest unmet need for CEA.