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.     

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.     

Barriers and facilitators of shared decision making in acutely ill inpatients with schizophrenia—Qualitative findings from the intervention group of a randomised‐controlled trial

BackgroundShared decision making (SDM) is appreciated as a promising model of communication between clinicians and patients. However, in acute mental health settings, its implementation is still unsatisfactory.ObjectiveThe aim of this study is to examine barriers and facilitators of SDM with acutely ill inpatients with schizophrenia.DesignA qualitative interview study was performed.Setting and ParticipantsThe analysis is based on interviews with participants (patients and staff members) of the intervention group of the randomised‐controlled SDM^PLUS trial that demonstrated a significant improvement of SDM measures for patients with schizophrenia on acute psychiatric wards.Main Variables StudiedInterviews addressed treatment decisions made during the current inpatient stay. The interviews were analysed using qualitative content analysis.ResultsA total of 40 interviews were analysed and 131 treatment decisions were identified. According to the interviewees, SDM had taken place in 29% of the decisions, whereas 59% of the decisions were made without SDM. In 16%, a clear judgement could not be made. Barriers and facilitators of SDM were categorised into patient factors, clinician factors, setting factors and others. Clinicians mostly reported patient factors (e.g., symptoms) as barriers towards SDM, which were not mirrored on the patients'' side. Facilitators included patient as well as clinician behaviour during consultations.ConclusionEven in the context of a successful SDM intervention, the implementation of SDM for patients in the very acute stages of schizophrenia is often not possible. However, strong facilitators for SDM have also been identified, which should be used for further implementation of SDM.Patient or Public ContributionDuring the development of the study protocol, meetings with user representatives were held.     

The role of doctor's opinion in shared decision making: what does shared decision making really mean when considering invasive medical procedures?1

OBJECTIVE: The goal of this study was to gain understanding about patients' perspectives on decision making in the context of invasive medical interventions and whether patients' decision-making preferences influenced the type of information they desired to be provided by physicians. DESIGN: Questionnaire study of consecutive patients in a university-based general medicine clinic. INTERVENTIONS: Patients were presented with a randomized list of three types of information that physicians could provide (risk, benefit and physician's opinion on whether they should undergo the procedure). Patients were asked whether they preferred patient-based, physician-based, or shared decision making and then were asked to select which one or combination of these three information types was most important to them in their own decision making. Patients were also asked to self-report on how many invasive procedures they had undergone in their own lives. PARTICIPANTS: A total of 202 consecutive patients (mean age = 65.1 years, SD = 12.3, range 28-88; mean education 13.3 years, SD 2.9, range 2-23). MAIN OUTCOME MEASURES: Patient reports. RESULTS: Of the 202 patients, two patients reported no decision-making preference. These two patients were excluded from the analysis. Of the 200 remaining patients, 62.5% (125/200) preferred shared, 22.5%(45/200) preferred physician-based, and 15.5% (31/200) preferred patient-based decision making. More than half of all subjects chose physician opinion as the most important type of information for decision making. Older patients (odds ratio 1.028; confidence interval 1.003-1.053) were more likely to have ranked the doctor's opinion as the most important in their decision making for invasive medical interventions. CONCLUSIONS: Although most patients want to share decision making with their physicians regarding invasive procedures, the majority of these patients report relying on the doctor's opinion on whether to undergo the procedure as the most important information in their own decision making.     

Shared decision making: trade‐offs between narrower and broader conceptions

Shared decision‐making approaches, by recognizing the autonomy and responsibility of both health professionals and patients, aim for an ethical ‘middle way’ between ‘paternalistic’ and ‘consumerist’ models of clinical decision making. Shared decision making has been understood in various ways. In this paper, we distinguish narrow and broader conceptions of shared decision making and explore their relative strengths and weaknesses. In the first part of the paper, we construct a summary characterization of an archetypal narrow conception of shared decision making (a conception that does not coincide with any specific published model but which reflects features of a variety of models). We show the shortcomings of such a conception and highlight the need to broaden out our thinking about shared decision making if the ethical (and instrumental) goals of shared decision making are to be realized. In the second part of the paper, we acknowledge and explore the advantages and disadvantages of operating with broader conceptions of shared decision making by considering the analogies between health professional–patient relationships and familiar examples of ‘open‐ended’ relationships (e.g. friendships). We conclude by arguing that the illustrated ‘trade‐offs’ between narrow conceptions (which may protect patients from inappropriately paternalistic professionals but preclude important forms of professional support) and broad conceptions (which render more forms of professional support legitimate but may require skills or virtues that not all health professionals possess) suggest the need to find ways, in principle and in practice, of taking seriously both patient autonomy and autonomy‐supportive professional intervention.     

Measurement challenges in shared decision making: putting the ‘patient’ in patient‐reported measures

Measuring clinicians' shared decision‐making (SDM) performance is a key requirement given the intensity of policy interest in many developed countries – yet it remains one of the most difficult methodological challenges, which is a concern for many stakeholders. In this Viewpoint Article, we investigate the development of existing patient‐reported measures (PRMs) of SDM identified in a recent review. We find that patients were involved in the development of only four of the 13 measures. This lack of patient involvement in PRM development is associated with two major threats to content validity, common to all 13 PRMs of SDM: (i) an assumption of patient awareness of ‘decision points’ and (ii) an assumption that there is only one decision point in each healthcare consultation. We provide detailed examples of these threats and their impact on accurate assessment of SDM processes and outcomes, which may hamper efforts to introduce incentives for SDM implementation. We propose cognitive interviewing as a recommended method of involving patients in the design of PRMs in the field of SDM and provide a practical example of this approach.     

Patient participation in collective healthcare decision making: the Dutch model

Objective  To study whether the Dutch participation model is a good model of participation.
Background  Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are involved in many formal decision-making processes. This model can be described as neo-corporatist.
Design  We did 52 interviews with actors in the healthcare field, 35 of which were interviews with representatives of patient organizations and 17 with actors that involved patient organizations in their decision making.
Results  Dutch patient organizations have many opportunities to participate in formal healthcare decision making and, as a result, have become institutionalized. Although there were several examples identified in which patient organizations were able to influence decision making, patient organizations remain in a dependent position, which they try to overcome through professionalization.
Discussion  Although this model of participation gives patient organizations many opportunities to participate, it also causes important tensions. Many organizations cannot cope with all the participation possibilities attributed to them. This participation abundance can therefore cause redistribution effects. Furthermore, their dependent position leads to the danger of being put to instrumental use. Moreover, professionalization causes tensions concerning empowerment possibilities and representativeness.
Conclusion  Although the Dutch model tries to make patient organizations an equal party in healthcare decision making, this goal is not reached in practice. It is therefore important to study more closely which subjects patients can and should contribute to, and in what way.     

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.     

Assessing collaborative efforts of making care fit for each patient: A systematic review

Introduction

For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit.

Methods

We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real-life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described.

Results

We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions ‘Patient-clinician collaboration: content’ (N = 396, 32%) and ‘Patient-clinician collaboration: manner’ (N = 382, 31%) and the least related to ‘Ongoing and iterative process’ (N = 22, 2%) and in ‘Minimally disruptive of patient lives’ (N = 29, 2%). The items referred to 27 specific actions. Most items referred to ‘Informing’ (N = 308, 25%) and ‘Exploring’ (N = 93, 8%), the fewest items referred to ‘Following up’, ‘Comforting’ and ‘Praising’ (each N = 3, 0.2%).

Discussion

Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care.

Patient Contribution

Patients and caregivers from the ‘Making care fit Collaborative’ were involved in drafting the dimensions relevant to patient–clinician collaboration.     

Patient involvement in clinical decision making: the effect of GP attitude on patient satisfaction

OBJECTIVE: This study investigates general practitioners' (GPs) and patients' attitudes to shared decision making, and how these attitudes affect patient satisfaction. BACKGROUND: Sharing of information and decisions in the consultation is largely accepted as the ideal in general practice. Studies show that most patients prefer to be involved in decision making and shared decision making is associated with patient satisfaction, although preferences vary. Still we know little about how the interaction of GP and patients' attitudes affects patient satisfaction. One such study was conducted in the USA, but comparative studies are lacking. DESIGN: Questionnaire survey distributed through GPs. SETTING AND PARTICIPANTS: The results are based on the combined questionnaires of 41 GPs and 829 of their patients in the urban municipality of Bergen in the western part of Norway. Main variables studied The data were collected using a nine-item survey instrument constructed to measure attitudes towards patient involvement in medical consultations. The patients were also asked to rate their satisfaction with their GP. RESULTS AND CONCLUSIONS: The patients had a strong preference for shared decision making. The GPs also generally preferred shared decision making, but to a lesser degree than the patients, which is the opposite of the findings of the US study. There was a positive effect of the GP's attitude towards shared decision making on patient satisfaction, but no significant effect of congruence of attitudes between patient and GP on patient satisfaction. The suggested explanation is that GPs that are positive to sharing decisions are more responsive to patients' needs and therefore satisfy patients even when the patient's attitude differs from the GPs' attitude. Hence, although some patients do prefer a passive role, it is important to promote positive attitudes towards patient involvement in medical consultations.     

Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ)

Context

Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences.

Objective

To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference.

Design

The Health Information Wants Questionnaire (HIWQ) was administered during May–December 2010 to gather data about the information and corresponding decision‐making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self‐care, complementary and alternative medicine (CAM), psychosocial factors and health‐care providers.

Setting

A large state university, public libraries and senior centres in Maryland, USA.

Participants

A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community‐dwelling older adults (mean age = 72; SD = 9.00).

Main Outcome Measures

Ratings on the information and decision‐making items of the HIWQ.

Results

Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly.

Conclusions

Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.