Provider perspectives on the utility of a colorectal cancer screening decision aid for facilitating shared decision making

Background Decision aids for colorectal cancer (CRC) screening have been shown to enable patients to identify a preferred screening option, but the extent to which such tools facilitate shared decision making (SDM) from the perspective of the provider is less well established. Objective Our goal was to elicit provider feedback regarding the impact of a CRC screening decision aid on SDM in the primary care setting. Methods Cross‐sectional survey. Participants Primary care providers participating in a clinical trial evaluating the impact of a novel CRC screening decision aid on SDM and adherence. Main outcomes Perceptions of the impact of the tool on decision‐making and implementation issues. Results Twenty‐nine of 42 (71%) eligible providers responded, including 27 internists and two nurse practitioners. The majority (>60%) felt that use of the tool complimented their usual approach, increased patient knowledge, helped patients identify a preferred screening option, improved the quality of decision making, saved time and increased patients’ desire to get screened. Respondents were more neutral is their assessment of whether the tool improved the overall quality of the patient visit or patient satisfaction. Fewer than 50% felt that the tool would be easy to implement into their practices or that it would be widely used by their colleagues. Conclusion Decision aids for CRC screening can improve the quality and efficiency of SDM from the provider perspective but future use is likely to depend on the extent to which barriers to implementation can be addressed.     

Lessons learned from the Decision Board: a unique and evolving decision aid

One session of the conference was devoted to the presentation of different types of decision aids. This paper reports the experience and lessons learned through the development and use of the Decision Board. This is a uniquely interactive decision aid administered by the clinician during the medical consultation. The instrument has been developed in a number of clinical contexts, primarily regarding treatment options for cancer patients. Studies have shown the instrument to improve patient understanding and facilitate the shared decision‐making process. Randomized trials are ongoing, evaluating the addition of the Decision Board to the traditional medical consultation. The instrument continues to evolve to meet patients’ need for information and flexibility in presentation. Computer‐based versions of the Decision Board are currently being developed.     

Shared decision making: informing and involving patients to do the right thing in health care

At the individual level, practicing high-quality medical care means doing the right thing for a patient as safely as possible. Some medical decisions have one optimal course of action, but most have multiple reasonable options with outcomes that will be valued differently by different people. For these preference-sensitive decisions, involving patients in a shared decision-making process is critical. Patient decision aids are tools that help make shared decision making practical. Policy changes at the federal and state level can help make shared decision making with the active participation of informed patients the rule rather than the exception.     

A patient decision aid for risk‐reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing

Background

BRCA1/2 mutation carriers’ choice between risk‐reducing salpingo‐oophorectomy (RRSO) and salpingectomy with delayed oophorectomy is very complex. Aim was to develop a patient decision aid that combines evidence with patient preferences to facilitate decision making.

Design

Systematic development of a patient decision aid in an iterative process of prototype development, alpha testing by patients and clinicians and revisions using International Patient Decision Aid Standards (IPDAS) quality criteria. Information was based on the available literature and current guidelines. A multidisciplinary steering group supervised the process.

Setting and participants

Pre‐menopausal BRCA1/2 mutation carriers choosing between RRSO and salpingectomy with delayed oophorectomy in Family Cancer Clinics in the Netherlands.

Main outcome measures

IPDAS quality criteria, relevance, usability, clarity.

Results

The patient decision aid underwent four rounds of alpha testing and revisions. Finally, two paper decision aids were developed: one for BRCA1 and one for BRCA2. They both contained a general introduction, three chapters and a step‐by‐step plan containing a personal value clarification worksheet. During alpha testing, risk communication and information about premature menopause and hormone therapy were the most revised items. The patient decision aids fulfil 37 of 43 (86%) IPDAS criteria for content and development process.

Discussion and conclusions

Both BRCA1/2 mutation carriers and professionals are willing to use or offer the developed patient decision aids for risk‐reducing surgery. The patient decision aids have been found clear, balanced and comprehensible. Future testing among patients facing the decision should point out its effectiveness in improving decision making.     

Shared Decision Making and Patient Decision Aids: Knowledge,Attitudes, and Practices Among Hawai‘i Physicians

Background: As the health care field moves toward patient-centered care (PCC), increasing emphasis has been placed on the benefits of patient decision aids for promoting shared decision making (SDM). This study provides a baseline measure of knowledge, attitudes, and practices (KAP) among Hawai‘i''s physicians with respect to patient decision aids (DAs). Physicians throughout the State of Hawai‘i were invited to complete a survey assessing their knowledge, attitudes, and practices with respect to the clinical use of DAs.One hundred and seventy four valid surveys were analyzed. Reported awareness and use of DAs were low, but recognition of the benefits of SDM and openness to the use of DAs were very high. The leading perceived barriers to the implementation of DAs were lack of awareness, lack of resources, and limited physician time to learn about DA technology. However, a significant majority of the respondents reported that DAs could empower patients by improving knowledge (88%), increasing satisfaction with the consultation process (81%), and increasing compliance (74%). Among physicians currently employing DAs, use of brochures or options matrix sheets was the most common aid tool. However, leading recommended DA formats were paper-based brochures for clinic use (75%) and interactive online website programs for outside clinic use (73.5%). Given growing emphasis on the PCC model and the recognized desire of many patients to participate in the medical decision making process, positive responses toward SDM and the use of DAs by Hawai‘i physicians are promising.     

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.     

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.     

Contemporary Health-Related Decision Aids: Tools for Social Work Practice

The escalating complexity in health-related decisions that people face have important implications for social work interventions. This article explores the nature of these implications within the context of decisional conflict, shared decision making, and the use of decision aids. In addition, the authors present the findings of a content analysis of 29 contemporary health-related decision aids. Emergent categories from this analysis are presented as a resource for social workers as they encounter, adapt, and create decision aids in their work to help address the health-related needs of their clients.     

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.     

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.     

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.     

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.     

Achieving involvement: process outcomes from a cluster randomized trial of shared decision making skill development and use of risk communication aids in general practice

BACKGROUND: A consulting method known as 'shared decision making' (SDM) has been described and operationalized in terms of several 'competences'. One of these competences concerns the discussion of the risks and benefits of treatment or care options-'risk communication'. Few data exist on clinicians' ability to acquire skills and implement the competences of SDM or risk communication in consultations with patients. OBJECTIVE: The aims of this study were to evaluate the effects of skill development workshops for SDM and the use of risk communication aids on the process of consultations. 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. Half the consultations were randomly selected for audio-taping, of which 352 patients attended and were audio-taped successfully. 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 allocated randomly to a consultation during baseline or intervention 1 (SDM or risk communication aids) or intervention 2 phases. A randomly selected half of the consultations were audio-taped from each phase. Raters (independent, trained and blinded to study phase) assessed the audio-tapes using a validated scale to assess levels of patient involvement (OPTION: observing patient involvement), and to analyse the nature of risk information discussed. Clinicians completed questionnaires after each consultation, assessing perceived clinician-patient agreement and level of patient involvement in decisions. Multilevel modelling was carried out with the OPTION score as the dependent variable, and rater, consultation and clinician levels of data, standardized by rater within clinician. RESULTS: Following each of the interventions, the clinicians significantly increased their involvement of patients in decision making (OPTION score increased by 10.6 following risk communication training [95% confidence interval (CI) 7.9 -13.3; P < 0.001] and by 12.9 after SDM skill development (95% CI 10 -15.8, P < 0.001), a moderate effect size. The level of involvement achieved by the risk communication aids was significantly increased by the subsequent introduction of the skill development workshops (7.7 increase in OPTION score, 95% CI 3.4-12; P < 0.001). The alternative sequence (skills followed by risk communication aids) did not achieve this effect. The use of most risk information formats increased after the provision of specific risk communication aids (P < 0.001). Clinicians using the risk communication tools perceived significantly higher patient and clinician agreement on treatment (P < 0.001), patient satisfaction with information (P < 0.01), clinician satisfaction with decision (P < 0.01) and general overall satisfaction with the consultation (P < 0.001) than those who were exposed to SDM skill development workshops. CONCLUSIONS: These clinicians were able to acquire the skills to implement SDM competences and to use risk communication aids. Each intervention provided independent effects. Further progress towards greater patient involvement in health care decision making is possible, and skill development in this area should be incorporated into postgraduate professional development programmes.     

Trials of decision aids for prostate cancer screening: a systematic review

BACKGROUND: Patient decision aids are used to promote informed decision making. This review examines the methods and findings of studies that have evaluated the impact of prostate cancer screening decision aids on patient outcomes. METHODS: MEDLINE, the Cochrane Registry, reference lists, and abstracts from professional meetings were searched through December 2006. Search terms included prostate cancer screening and decision making. Studies were included if a patient education intervention for prostate cancer screening had been evaluated against a control condition. RESULTS: Eighteen eligible trials, involving 6221 participants, were identified. Sixteen studies enrolled primary care patients, while the remaining two studies were community-based. All the prostate cancer screening decision aids were in English, with varied reading levels. Consistent with previous reviews, the patient decision aids improved patient knowledge and made patients more confident about their decisions. The aids appeared to decrease interest in prostate-specific antigen testing and screening behavior among patients seeking routine care (relative risk [RR]=0.88, 95% confidence interval [CI]=0.81-0.97, p=0.008); the aids had no impact on the screening behavior of patients seeking screening services. Additionally, patients who received patient decision aids were more likely to prefer watchful waiting as a treatment option if they were found to have prostate cancer than were controls (RR=1.53, 95% CI=1.31-1.77, p<0.001). CONCLUSIONS: Prostate cancer screening decision aids enhance patient knowledge, decrease decisional conflict, and promote greater involvement in decision making. The absence of outcome measures that reflect all elements of informed decision making continues to limit the field.     

Value Assessment at the Point of Care: Incorporating Patient Values throughout Care Delivery and a Draft Taxonomy of Patient Values

Incorporation of patient values is a key element of patient-centered care, but consistent incorporation of patient values at the point of care is lacking. Shared decision making encourages incorporation of patient values in decision making, but associated tools often lack guidance on value assessment. In addition, focusing on patient values relating only to specific decisions misses an opportunity for a more holistic approach to value assessment that could impact other aspects of clinical encounters, including health care planning, communication, and stakeholder involvement. In this commentary, we propose a taxonomy of values underlying patient decision making and provide examples of how these impact provision of health care. The taxonomy describes four categories of patient values: global, decisional, situational, and external. Global values are personal values impacting decision making at a universal level and can include value traits and life priorities. Decisional values are the values traditionally conceptualized in decision making, including considerations such as efficacy, toxicity, quality of life, convenience, and cost. Situational values are values tied to a specific moment in time that modify patients’ existing global and decisional values. Finally, discussion of external values acknowledges that many patients consider values other than their own when making decisions. Recognizing the breadth of values impacting patient decision making has implications for both overall health care delivery and shared decision making because value assessments focusing only on decisional values may miss important patient considerations. This draft taxonomy highlights different values impacting decision making and facilitates a more complete value assessment at the point of care.     

Evaluating decision aids – where next?

Decision aids have been developed to help patients become involved in decision‐making about their individual health care. During the evaluation of a particular decision aid in maternity care – a set of 10 ‘Informed Choice’ leaflets – we considered the lessons learnt for evaluation of decision aids in the future. Decision aids have been tested mainly in explanatory trials and have been found to be effective. We argue that existing decision aids should be subjected to more pragmatic trials to test their effectiveness in the real world. The small amount of evidence on their use in the real world shows that they face challenges, resulting in poor implementation. Therefore, we propose that implementation strategies are developed which take heed of the findings of research on getting evidence into practice, and in particular address structural barriers such as the lack of time available to health professionals. We recommend that these ‘decision aid implementation packages’ are developed in conjunction with both health professionals and patients, and identify and address potential barriers to both the delivery of patient involvement in decision‐making, and the use of decision aids, in the real world. These ‘packages’ can then be submitted to pragmatic evaluation.     

Assessing the conceptual clarity and evidence base of quality criteria/standards developed for evaluating decision aids

Context Promoting patient participation in treatment decision making is of increasing interest to researchers, clinicians and policy makers. Decision aids (DAs) are advocated as one way to help achieve this goal. Despite their proliferation, there has been little agreement on criteria or standards for evaluating these tools. To fill this gap, an international collaboration of researchers and others interested in the development, content and quality of DAs have worked over the past several years to develop a checklist and, based on this checklist, an instrument for determining whether any given DA meets a defined set of quality criteria. Objective/Methods In this paper, we offer a framework for assessing the conceptual clarity and evidence base used to support the development of quality criteria/standards for evaluating DAs. We then apply this framework to assess the conceptual clarity and evidence base underlying the International Patient Decision Aids Standards (IPDAS) checklist criteria for one of the checklist domains: how best to present in DAs probability information to patients on treatment benefits and risks. Conclusion We found that some of the central concepts underlying the presenting probabilities domain were not defined. We also found gaps in the empirical evidence and theoretical support for this domain and criteria within this domain. Finally, we offer suggestions for steps that should be undertaken for further development and refinement of quality standards for DAs in the future.     

On the suitability of fast and frugal heuristics for designing values clarification methods in patient decision aids: a critical analysis

Background Increasingly, patient decision aids and values clarification methods (VCMs) are being developed to support patients in making preference‐sensitive health‐care decisions. Many VCMs encourage extensive deliberation about options, without solid theoretical or empirical evidence showing that deliberation is advantageous. Research suggests that simple, fast and frugal heuristic decision strategies sometimes result in better judgments and decisions. Durand et al. have developed two fast and frugal heuristic‐based VCMs. Objective To critically analyse the suitability of the ‘take the best’ (TTB) and ‘tallying’ fast and frugal heuristics in the context of patient decision making. Strategy Analysis of the structural similarities between the environments in which the TTB and tallying heuristics have been proven successful and the context of patient decision making and of the potential of these heuristic decision processes to support patient decision making. Conclusion The specific nature of patient preference‐sensitive decision making does not seem to resemble environments in which the TTB and tallying heuristics have proven successful. Encouraging patients to consider less rather than more relevant information potentially even deteriorates their values clarification process. Values clarification methods promoting the use of more intuitive decision strategies may sometimes be more effective. Nevertheless, we strongly recommend further theoretical thinking about the expected value of such heuristics and of other more intuitive decision strategies in this context, as well as empirical assessments of the mechanisms by which inducing such decision strategies may impact the quality and outcome of values clarification.     

Decision Aid for Nutrition Support in Pediatric Oncology: A Pilot Study

Background: Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision‐focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients’ risk perception, and increase patient participation in the decision‐making process. They have never been evaluated for pediatric oncology nutrition decisions. We aimed to develop and pilot test a decision aid to assist parents making these decisions in collaboration with their healthcare team. Materials and Methods: The decision aid was developed in accordance with the International Patient Decision Aid Standards guidelines and evaluated in a single‐center pilot study. The parents and healthcare professionals of pediatric oncology patients were eligible. Participants read the decision aid and completed a questionnaire assessing acceptability, usability, and improvement in understanding. Results: Thirty‐one parents and 15 healthcare professionals participated. Parents found the decision aid balanced, relevant, and satisfactory overall. Some parents reported the decision aid was too long (26%). Healthcare professionals positively rated the development process, usefulness to parents, and content and format of the decision aid. Forty‐three percent reported that using the decision aid would save them time. There were no significant associations between health literacy, decisional satisfaction, decisional regret, acceptability, and improvement in understanding. Conclusion: The decision aid appears acceptable and usable for our target population. Decision aid feedback provided critical data to make modifications before evaluating the decision aid in a randomized controlled trial.