Adrian G. Edwards

The OPTION scale: measuring the extent that clinicians involve patients in decision-making tasks.

Objective  To examine the psychometric properties of a revised scale, named ‘observing patient involvement in decision making’ (OPTION), by analysing its reapplication to a sample of routine primary care consultations. The OPTION instrument assesses to what degree clinicians involve patients in decision making.

Do hospital-based palliative teams improve care for patients or families at the end of life?

To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the samples standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice.

Towards a feasible model for shared decision making: focus group study with general practice registrars

Abstract Objectives: To explore the views of general practice registrars about involving patients in decisions and to assess the feasibility of using the shared decision making model by means of simulated general practice consultations. Design: Qualitative study based on focus group interviews. Setting: General practice vocational training schemes in south Wales. Participants: 39 general practice registrars and eight course organisers (acting as observers) attended four sessions; three simulated patients attended each time. Method: After an introduction to the principles and suggested stages of shared decision making the registrars conducted and observed a series of consultations about choices of treatment with simulated patients using verbal, numerical, and graphical data formats. Reactions were elicited by using focus group interviews after each consultation and content analysis undertaken. Results: Registrars in general practice report not being trained in the skills required to involve patients in clinical decisions. They had a wide range of opinions about “involving patients in decisions,” ranging from protective paternalism (“doctor knows best”), through enlightened self interest (lightening the load), to the potential rewards of a more egalitarian relationship with patients. The work points to three contextual precursors for the process: the availability of reliable information, appropriate timing of the decision making process, and the readiness of patients to accept an active role in their own management. Conclusions: Sharing decisions entails sharing the uncertainties about the outcomes of medical processes and involves exposing the fact that data are often unavailable or not known; this can cause anxiety to both patient and clinician. Movement towards further patient involvement will depend on both the skills and the attitudes of professionals, and this work shows the steps that need to be taken if further progress is to be made in this direction. Key messages Involvement of patients in decisions about their treatment or care is increasingly advocated Registrars in general practice report not receiving training in the skills needed for successful involvement of patients in decision making Attitudes towards involving patients range from being highly positive to being more circumspect Moves towards enhancing patient involvement in decision making will depend on developing both skills and attitudes of professionals

Decision analysis in patient care

To help patients to fully participate in shared decision making is becoming an important goal in clinical practice and one which is receiving increasing attention in terms of the requisite skills and technological development. We discuss the potential application of decision analysis-a specific technology that has been introduced into clinical practice but to date only within research contexts-and examine the usefulness and feasibility of the technique for patients, particularly in settings where clinical presentations are diverse and characterised by uncertainty.

Exploring doctor and patient views about risk communication and shared decision-making in the consultation.

Background  There have been significant conceptual developments regarding shared decision‐making (SDM) and assessments of peoples hypothetical preferences for involvement in treatment or care decisions. There are few data on the perceptions of patients and professionals about SDM in actual practice.

Consumers’ views of quality in the consultation and their relevance to ‘shared decision-making’ approaches

Background There is a recognized need to assess the effects of shared decision‐making and other communication interventions. However, the outcomes usually assessed for evidence of ‘effectiveness’ are determined by researchers and have not been based on consumers’ views.

Manufactured but not imported: new directions for research in shared decision making support and skills

Significant conceptual work on shared decision making has taken place but there are still significant challenges in achieving it in routine clinical practice. This paper outlines what research has identified to date that may promote shared decision making, and the further research that is required to enable continuing progress. Greater understanding of the models of decision making and instruments to identify them in practice are still required. Specifying consumer competences, developing instruments to assess these and interventions to enhance them may also be important. Clarifying all these aspects may enable those charged with training professionals to improve the content of professional development programmes. This may be particularly important in the field of cancer treatments where the stakes are high-patients usually desire much information but their desire for involvement in decision making is more variable. The consequences of getting this balance right or wrong are significant with much to be gained or lost. Continued development and evaluation of decision aids and decision explorers that use interactive technology will also be important in identifying how to progress with consumer involvement. If we can learn these lessons, then wider implementation of shared decision making or consumer involvement may become a nearer prospect.

Is 'shared decision-making' feasible in consultations for upper respiratory tract infections? Assessing the influence of antibiotic expectations using discourse analysis.

To examine the discourse of consultations in which conflict occurs between parents and clinicians about the necessity of antibiotics to treat an upper respiratory tract infection. To appraise the feasibility of shared decision‐making in such consultations.

Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.

Objective This paper offers ‘consumer‐led’ reflections by steering group members of a patient‐centred research study involving consumer advocates, patients’ associations and patients, throughout the whole study, from pre‐ to post‐study phases.

Efficiency of Searching the Grey Literature in Palliative Care

A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.