Participation in medical decision making: the patients' perspective.

PURPOSE: Variability in reports of patients' preferences to participate in decision making may be due in part to a lack of understanding about how patients conceptualize their participation. The authors sought to learn more about how patients view their involvement in decisions related to their health care. METHODS: The authors conducted individual interviews to allow patients to frame the decision-making process from their own perspective. The constant comparative-method approach to analysis was employed to ensure that the analysts defined the codes in a consistent manner. RESULTS: Twenty-six persons were interviewed. The main themes discussed by the participants reflecting how they viewed their involvement in medical decision making are the following: 1) decision making is often an ongoing process in which patient participation may change over time, 2) decision making is performed within an extended social context, 3) the decisions patients report being involved in are often distinct from those traditionally studied (choice of treatment or screening strategies), 4) patient involvement in decision making occurs in response to physicians' recommendations, and 5) patients make choices in the context of their specific illness perceptions. CONCLUSIONS: Participants in this study view their participation in decision making as including ideas distinct from those traditionally discussed by researchers. These findings suggest that the variability in patient participation noted in previous studies may be due in part to limitations in study design.     

Patient factors in the implementation of decision aids in general practice: a qualitative study

Background  Decision aids (DAs) have been developed to help patients make treatment decisions. Research shows that they are effective in increasing patients' knowledge of treatment options without raising anxiety or conflict. However, they have not been routinely adopted for use in general practice in the UK and there are few reports addressing strategies to introduce them.
Objective  To examine patients' views about a variety of DAs for different conditions (heart disease, osteoporosis, osteoarthritis and breast cancer) in order to inform a strategy to introduce them into general practice.
Setting and participants  General practice patients over the age of 18 years being or having been treated for one of the conditions above.
Methods  Qualitative study involving 12 focus groups with 77 patients evaluating decision aids relevant to their conditions. A semi-structured interview guide was used to generate discussions about the applicability of the DAs in routine general practice.
Results  Patients welcomed DAs for their educational and informational content. Reactions to the DAs were influenced by patients' own personal desires for involvement. The main concerns were that the use of DAs would potentially shift the onus of decision making responsibility on to the patient and about the practical challenges to implementation.
Conclusions  Clinicians will need to make explicit to patients that DAs are an adjunct to routine care and not a replacement, and therefore do not represent a derogation of responsibility. DAs need to be used as an integral part of the communication and support process for patients who want them.     

Shared decision making in clinical medicine: past research and future directions

CONTENT: Shared medical decision making is a process by which patients and providers consider outcome probabilities and patient preferences and reach a health care decision based on mutual agreement. Shared decision making is best used for problems involving medical uncertainty. During the process the provider-patient dyad considers treatment options and consequences and explores the fit of expected benefits and consequences of treatment with patient preferences for various outcomes. This paper reviews the literature on shared medical decision making. Several questions are considered. Although several studies suggest that patients do not want to be involved in decision making, these studies typically fail to separate decisions about technical aspects of treatment from preferences for outcomes. There is considerable evidence that patients want to be consulted about the impact of treatment. Studies on the acceptability of shared decision making for physicians have produced inconsistent results. Shared decision making is more acceptable to younger and better-educated patients. It remains unclear whether shared decision making requires expensive video presentations or whether the same results can be obtained with simpler methods, such as the decision board. We conclude that shared medical decision making is an important development in health care. More research is necessary to identify the effects of shared decision making on patient satisfaction and health outcomes. Further, more research is necessary in order to evaluate the most effective methods for engaging patients in decisions about their own health care.     

Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making?

Background Given the large number of interventions of uncertain effectiveness, research on communicating uncertainty is needed to examine its impact on patients’ health decisions. Objective To examine physicians’ communication of uncertainty and its impact on patients’ decisions and decision satisfaction. Design, setting, and participants Participants included female patients seen in a breast health centre whose physicians were discussing a decision with them, with no clear ‘best’ choice based on outcome evidence. Main variables Decision communication was measured using the OPTION scale, a measure of the degree to which physicians involve patients in a decision‐making process. One‐to‐two weeks after the discussion, patients reported their satisfaction with the decision‐making process and their decision. Decisions were verified in medical charts with patient consent. Results Seventy‐five women agreed to participate (94% response rate). The mean translated score of the OPTION scale was 68.0 (SD 18.3), but only 33.2 (SD 19.1) for the uncertainty items. Among cancer patients, communicating uncertainty was negatively related to decision satisfaction (P < 0.002), and there was an interaction between patient involvement in decisions and communicating uncertainty in relation to patients’ decision satisfaction (P < 0.03). Discussion Communicating scientific uncertainty might lead to less decision satisfaction among women facing cancer treatment decisions; this could be a natural outcome of the decision making process. Involving patients in decisions might help them tolerate uncertainty. Conclusion Future studies should consider assessing other outcomes (e.g. knowledge, physician support) of the decision making process. There may be trade‐offs between acknowledging uncertainty and immediate decision satisfaction.     

Toward the 'tipping point': decision aids and informed patient choice

Preference-sensitive treatment decisions involve making value trade-offs between benefits and harms that should depend on informed patient choice. There is strong evidence that patient decision aids not only improve decision quality but also prevent the overuse of options that informed patients do not value. This paper discusses progress in implementing decision aids and the policy prospects for reaching a "tipping point" in the adoption of "informed patient choice" as a standard of practice.     

Feasibility and effects of decision aids.

Decision aids for patients have recently been introduced in health care. A literature review was conducted to address the following research questions: 1) which types of decision aids have been developed?; 2) to what extent are they feasible, and acceptable to patients and health care providers?; 3) do decision aids affect the decision-making process and patients' outcomes? Thirty non-controlled (e.g., one-group-only designs) and controlled studies (e.g., randomized experimental designs) were identified. Decision aids were found to be feasible and acceptable to patients and to increase the agreement between patients' values and decisions and patients' knowledge. The effects of decision aids on decisions and on patients' outcomes, including decision uncertainty, satisfaction, and health, have rarely been addressed. When studied, the beneficial effects of decision aids on these outcomes appear to be rather modest. Implications for future development of decision aids and the design of studies are discussed.     

Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision

BACKGROUND: Shared decision making has practical implications for everyday health care. However, it stems from largely theoretical frameworks and is not widely implemented in routine practice. AIMS: We undertook an empirical study to inform understanding of shared decision making and how it can be operationalized more widely. METHOD: The study involved patients visiting UK general practitioners already well experienced in shared decision making. After these consultations, semi-structured telephone interviews were conducted and analysed using the constant comparative method of content analysis. RESULTS: All patients described at least some components of shared decision making but half appeared to perceive the decision as shared and half as 'patient-led'. However, patients exhibited some uncertainty about who had made the decision, reflecting different meanings of decision making from those described in the literature. A distinction is indicated between the process of involvement (option portrayal, exchange of information and exploring preferences for who makes the decision) and the actual decisional responsibility (who makes the decision). The process of involvement appeared to deliver benefits for patients, not the action of making the decision. Preferences for decisional responsibility varied during some consultations, generating unsatisfactory interactions when actual decisional responsibility did not align with patient preferences at that stage of a consultation. However, when conducted well, shared decision making enhanced reported satisfaction, understanding and confidence in the decisions. CONCLUSIONS: Practitioners can focus more on the process of involving patients in decision making rather than attaching importance to who actually makes the decision. They also need to be aware of the potential for changing patient preferences for decisional responsibility during a consultation and address non-alignment of patient preferences with the actual model of decision making if this occurs.     

Involving patients in decisions regarding preventive health interventions using the analytic hierarchy process

Practice guidelines that recommend active patient involvement in decisions about preventive health interventions are becoming increasingly common. These decisions frequently involve difficult trade‐offs between competing risks and benefits that require easily accessible information about the expected outcomes, superb doctor–patient communication, and effective integration of objective outcome data with individual values and preferences. Successful implementation of recommendations for shared decision‐making in preventive health care will require the development of efficient methods for making these complex decisions in busy practice settings. This article describes how the analytic hierarchy process, a multiple criteria decision‐making method, could facilitate successful implementation of shared decision‐making regarding preventive health care in clinical practice. The method is illustrated using recent guidelines for colorectal cancer screening for average risk patients issued by the American Gastroenterological Association.     

Clinical practice guidelines and patient decision aids. An inevitable relationship

As health professionals and patients are moving toward shared models of decision making, there is a growing need for integrated decision support tools that facilitate uptake of best evidence in routine clinical practice in a patient-centered manner. This article charts the landscape of clinical practice guidelines (CPGs) and patient decision aids. Decision support tools for medical practice can be mapped on two dimensions. (1) The target user and his or her level of decision making; either for groups of patients or for an individual patient and (2) the level of uncertainty: either supporting more directive decision making (behavior support) in the case of strong recommendations with a single best option or supporting dialog (deliberation support) on the pros and cons of different options in the case of conditional (or weak) recommendations. We conclude that it is important to establish closer links between CPGs and patient decision aids, through collaborative development of both. Such collaboration will encourage the design of decision support tools for professionals and patients who share the same evidence and the aim to increase the quality of decision making between doctor and patient. This could facilitate the implementation of CPGs and shared decision making in clinical practice.     

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses’ views on sharing decisions with patients regarding inhaler device selection

Background Although patients with asthma would like more involvement in the decision‐making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice. Objective To investigate how nurses approach decision making in relation to inhaler choice and long‐term inhaler use within a routine asthma consultation and to better understand the barriers and facilitators to shared decision making in practice. Setting and participants Semi‐structured interviews were conducted with post‐registration, qualified nurses who routinely undertook asthma consultations and were registered on a respiratory course. Interviews were recorded, transcribed and analysed using the Framework approach. Results Twenty participants were interviewed. Despite holding positive views about shared decision making, limited shared decision making was reported. Opportunities for patients to share decisions were only offered in relation to inhaler device, which were based on the nurse’s pre‐selected recommendations. Giving patients this ‘choice’ was seen as key to improving adherence. Discussion There is a discrepancy between nurses’ understanding of shared decision making and the depictions of shared decision making presented in the academic literature and NHS policy. In this study, shared decision making was used as a tool to support the nurses’ agenda, rather than as a natural expression of equality between the nurse and patient. Conclusion There is a misalignment between the goals of practice nurses and the rhetoric regarding patient empowerment. Shared decision making may therefore only be embraced if it improves patient outcomes. This study indicates attitudinal shifts and improvements in knowledge of ‘shared decision‐making’ are needed if policy dictates are to be realised.     

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.     

Introducing decision AIDS at group health was linked to sharply lower hip and knee surgery rates and costs

Decision aids are evidence-based sources of health information that can help patients make informed treatment decisions. However, little is known about how decision aids affect health care use when they are implemented outside of randomized controlled clinical trials. We conducted an observational study to examine the associations between introducing decision aids for hip and knee osteoarthritis and rates of joint replacement surgery and costs in a large health system in Washington State. Consistent with prior randomized trials, our introduction of decision aids was associated with 26?percent fewer hip replacement surgeries, 38?percent fewer knee replacements, and 12-21?percent lower costs over six months. These findings support the concept that patient decision aids for some health conditions, for which treatment decisions are highly sensitive to both patients' and physicians' preferences, may reduce rates of elective surgery and lower costs.     

Clinical decision making--what every non-clinician manager should know but was never taught.

The management of a health care system requires making decisions and establishing policies that can affect the process of patient care. Clinicians often complain that these decisions and policies are made by people without clinical training. Clinical knowledge is not a prerequisite for a career in health policy or management. Even graduates of accredited health administration programs are not required to understand the process of clinical decision making or the nature of medical practice. Much of the health services literature advocates a shared decision-making model for clinicians and managers. However, most of the literature focuses on how to involve physicians in management decision making; almost none discusses management involvement in clinical decisions. This paper briefly examines how non-clinician managers can support the clinical decision-making process and then specifies the knowledge and skills required for them to play this role.     

For the good of many: an infection control perspective on ethics

The decisions made by infection control personnel affect both individuals and those in the broader patient population in a health care facility. In making the decisions required to provide an environment free of infectious risks, while maintaining the rights of individuals to attain optimal health outcomes, infection control practitioners are often confronted with ethical dilemmas.This article describes an ethical dilemma commonly faced in infection control practice, where the needs of one patient must be weighed against the needs of the patient population. A case study describing the decision to isolate an infectious patient is presented, highlighting the role that ethics plays in decisions made to control infection. A decision making framework is applied to ensure that the needs of both individuals and groups are considered. Resource considerations and the need to conform to basic microbiological and epidemiological principles are also considered. The various issues in conflict are described, analysed, resolved and rationalised. The use of a decision making framework can help to ensure that competing interests are carefully considered to produce an ethical, and optimal, decision.     

Supporting and resourcing treatment decision‐making: some policy considerations

This paper considers some of the policy implications of issues raised during a conference about treatment decision‐making in the clinical encounter held in Hamilton, Ontario in May 1999. Policies promoting patient participation in treatment decision‐making need to be flexible enough to ensure that they are appropriate across the range of contexts in which health care decisions are made and acceptable to people with diverse preferences and abilities. They should also be formulated in consideration of other health policies and of available resources. Policies of informing people and involving them in decisions about their care are unlikely to be simple to implement. Various strategies might be needed to support them. These include the development of appropriate skills among health professionals and in the general population, the use of interventions to encourage people to play more active roles in decisions about their health care, the provision of decision aids for people facing specific decisions and the provision and accreditation of more general information resources and services. If information and other facilitators of patient participation in decision‐making are seen as integral to good quality health care, then funding should be made available for them. This will, however, have opportunity costs. Policy makers’ decisions about how much health care funding should be invested in which strategies should be underpinned by good research evidence about the effects that different types of intervention have on a range of outcomes for individuals, health care systems and populations. The knowledge on which current policies are based is limited. The development of future policies will be enhanced if policy makers invest in critical conceptual thinking, reflective practice, imaginative development work and good quality evaluative research.     

The impact of decision aids to enhance shared decision making for diabetes (the DAD study): protocol of a cluster randomized trial

ABSTRACT: BACKGROUND: Shared decision making contributes to high quality healthcare by promoting a patientcentered approach. Patient involvement in selecting the components of a diabetes medication program that best match the patient's values and preferences may also enhance medication adherence and improve outcomes. Decision aids are tools designed to involve patients in shared decision making, but their adoption in practice has been limited. In this study, we propose to obtain a preliminary estimate of the impact of patient decision aids vs. usual care on measures of patient involvement in decision making, diabetes care processes, medication adherence, glycemic and cardiovascular risk factor control, and resource utilization. In addition, we propose to identify, describe, and explain factors that promote or inhibit the routine embedding of decision aids in practice. METHODS: We will be conducting a mixed-methods study comprised of a cluster-randomized, practical, multicentered trial enrolling clinicians and their patients (n = 240) with type 2 diabetes from rural and suburban primary care practices (n = 8), with an embedded qualitative study to examine factors that influence the incorporation of decision aids into routine practice. The intervention will consist of the use of a decision aid (Statin Choice and Aspirin Choice, or Diabetes Medication Choice) during the clinical encounter. The qualitative study will include analysis of video recordings of clinical encounters and in-depth, semi-structured interviews with participating patients, clinicians, and clinic support staff, in both trial arms. DISCUSSION: Upon completion of this trial, we will have new knowledge about the effectiveness of diabetes decision aids in these practices. We will also better understand the factors that promote or inhibit the successful implementation and normalization of medication choice decision aids in the care of chronic patients in primary care practices. Trial registration NCT00388050.     

Patient-based outcome results from a cluster randomized trial of shared decision making skill development and use of risk communication aids in general practice

BACKGROUND: Shared decision-making (SDM) between professionals and patients is increasingly advocated from ethical principles. Some data are accruing about the effects of such approaches on health or other patient-based outcomes. These effects often vary substantially between studies. OBJECTIVE: Our aim was to evaluate the effects of training GPs in SDM, and the use of simple risk communication aids in general practice, on patient-based outcomes. METHODS: A cluster randomized trial with crossover was carried out with the participation of 20 recently qualified GPs in urban and rural general practices in Gwent, South Wales. A total of 747 patients with known atrial fibrillation, prostatism, menorrhagia or menopausal symptoms were invited to a consultation to review their condition or treatments. After baseline, participating doctors were randomized to receive training in (i) SDM skills; or (ii) the use of simple risk communication aids, using simulated patients. The alternative training was then provided for the final study phase. Patients were randomly allocated to a consultation during baseline or intervention 1 (SDM or risk communication aids) or intervention 2 phases. A randomly selected half of the consultations took place in 'research clinics' to evaluate the effects of more time for consultations, compared with usual surgery time. Patient-based outcomes were assessed at exit from consultation and 1 month follow-up. These were: COMRADE instrument (principal measures; subscales of risk communication and confidence in decision), and a range of secondary measures (anxiety, patient enablement, intention to adhere to chosen treatment, satisfaction with decision, support in decision making and SF-12 health status measure). Multilevel modelling was carried out with outcome score as the dependent variable, and follow-up point (i.e. exit or 1 month later for each patient), patient and doctor levels of explanatory variables. RESULTS: No statistically significant changes in patient-based outcomes due to the training interventions were found: COMRADE risk communication score increased 0.7 [95% confidence interval (CI) -0.92 to 2.32] after risk communication training and 0.9 (95% CI -0.89 to 2.35) after SDM training; and COMRADE satisfaction with communication score increased by 1.0 (95% CI -1.1 to 3.1) after risk communication, and decreased by 0.6 (95% CI 2.7 to -1.5) after SDM training. Patients' confidence in the decision (2.1 increase, 95% CI 0.7-3.5, P < 0.01) and expectation to adhere to chosen treatments (0.7 increase, 95% CI 0.04-1.36, P < 0.05) were significantly greater among patients seen in the research clinics (when more time was available) compared with usual surgery time. Most outcomes deteriorated between exit and 1 month later. There was no interaction between intervention effects. CONCLUSION: Patients can be more involved in treatment decisions, and risks and benefits of treatment options can be explained in more detail, without adversely affecting patient-based outcomes. SDM and risk communication may be advocated from values and ethical principles even without evidence of health gain or improvement in patient-based outcomes, but the resources required to enhance these professional skills must also be taken into consideration. These data also indicate the benefits of extra consultation time.     

A systematic review of decision support needs of parents making child health decisions

Objective  To identify the decision support needs of parents attempting to make an informed health decision on behalf of a child.
Context  The first step towards implementing patient decision support is to assess patients' information and decision-making needs.
Search strategy  A systematic search of key bibliographic databases for decision support studies was performed in 2005. Reference lists of relevant review articles and key authors were searched. Three relevant journals were hand searched.
Inclusion criteria  Non-intervention studies containing data on decision support needs of parents making child health decisions.
Data extraction and synthesis  Data were extracted on study characteristics, decision focus and decision support needs. Studies were quality assessed using a pre-defined set of criteria. Data synthesis used the UK Evidence for Policy and Practice Information and Co-ordinating Centre approach.
Main results  One-hundred and forty nine studies were included across various child health decisions, settings and study designs. Thematic analysis of decision support needs indicated three key issues: (i) information (including suggestions about the content, delivery, source, timing); (ii) talking to others (including concerns about pressure from others); and (iii) feeling a sense of control over the process that could be influenced by emotionally charged decisions, the consultation process, and structural or service barriers. These were consistent across decision type, study design and whether or not the study focused on informed decision making.     

Validation of a decision regret scale.

BACKGROUND: As patients become more involved in health care decisions, there may be greater opportunity for decision regret. The authors could not find a validated, reliable tool for measuring regret after health care decisions. METHODS: A 5-item scale was administered to 4 patient groups making different health care decisions. Convergent validity was determined by examining the scale's correlation with satisfaction measures, decisional conflict, and health outcome measures. RESULTS: The scale showed good internal consistency (Cronbach's alpha = 0.81 to 0.92). It correlated strongly with decision satisfaction (r = -0.40 to -0.60), decisional conflict (r = 0.31 to 0.52), and overall rated quality of life (r = -0.25 to -0.27). Groups differing on feelings about a decision also differed on rated regret: F(2, 190) = 31.1, P < 0.001. Regret was greater among those who changed their decisions than those who did not, t(175) = 16.11, P < 0.001. CONCLUSIONS: The scale is a useful indicator of health care decision regret at a given point in time.