Patient Education and Counseling 87 (2012) 206–211

Medical Decision Making

What perceptions do patients have of decision making (DM)? Towardan integrative patient-centered care model. A qualitative study usingfocus-group interviews

Alain Moreau *, Laurent Carol, Marie Cecile Dedianne, Christian Dupraz, Corinne Perdrix,Xavier Laine, Gilbert Souweine

Department of General Practice, University Claude Bernard Lyon 1, France

A R T I C L E I N F O

Article history:

Received 7 December 2010

Received in revised form 14 August 2011

Accepted 16 August 2011

Keywords:

Patient perception

Decision making

Shared decision making

Patient-centered care

Qualitative research

A B S T R A C T

Objective: To understand patients’ perceptions of decision making and identify relationships among

decision-making models.

Methods: This qualitative study was made up of four focus group interviews (elderly persons, users of

health support groups, students, and rural inhabitants). Participants were asked to report their

perceptions of decision making in three written clinical scenarios (hypertension, breast cancer, prostate

cancer). The analysis was based on the principles of grounded theory.

Results: Most patients perceived decision making as shared decision making, a deliberative question–

response interaction with the physician that allowed patients to be experts in obtaining clearer

information, participating in the care process, and negotiating compromises with physician preferences.

Requesting second opinions allowed patients to maintain control, even within the paternalistic model

preferred by elderly persons. Facilitating factors (trust, qualitative non-verbal communication, time to

think) and obstacles (serious/emergency situations, perceived inadequate scientific competence,

problems making requests, fear of knowing) were also part of shared decision making.

Conclusion and practice implications: In the global concept of patient-centered care, shared decision

making can be flexible and can integrate paternalistic and informative models. Physicians’ expertise

should be associated with biomedical and relational skills through listening to, informing, and advising

patients, and by supporting patients’ choices.

� 2011 Elsevier Ireland Ltd. All rights reserved.

Contents lists available at SciVerse ScienceDirect

Patient Education and Counseling

jo ur n al h o mep ag e: w ww .e lsev ier . co m / loc ate /p ated u co u

1. Introduction

Decision making (DM) in medical practice can be conceptual-ized according to three models developed by Charles [1]: thepaternalistic model, in which the physician is motivated by theprinciple of benevolence and decides what is best for the patient;the consumerist informative model, in which the autonomouspatient makes a decision without direct physician involvementonce she/he has been informed; and the shared decision making(SDM) model, in which decisions are made through an interactive,deliberative process wherein the patient may express him/herselfand discuss treatment preferences with the physician. Theobligations to inform patients about their medical conditionsand treatment options and to obtain patients’ informed consent forany treatment or information sharing are parts of a shift from thepaternalistic model toward one in which physician–patient

* Corresponding author. Tel.: +33 4 74965070.

E-mail address: alainmoreau0917@orange.fr (A. Moreau).

0738-3991/$ – see front matter � 2011 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2011.08.010

partnerships are founded on the principle of patient autonomy[2,3]. Several studies [4,5] have found that patients wish to beinvolved in DM. SDM is often considered to be an ideal approachthat may be difficult to attain [6], in part because patients rarelyplay an active role in process of DM and physicians rarely ask aboutpatients’ expectations [7,8]. Misunderstandings are common [9].Not all authors agree with the SDM concept, especially whencombined with patient-centered care (PCC) [10–12]. What arepatients’ perceptions of DM? How can these perceptions contrib-ute to the discussion about conceptual definitions and interactionsbetween Charles’s three models? To answer these questions, aqualitative study based on an in-depth focus group interviewmethod was undertaken in Lyon, France.

2. Methods

2.1. Study population

The organization of our four focus groups was based on thehypothesis that patients’ attitudes toward DM might vary

A. Moreau et al. / Patient Education and Counseling 87 (2012) 206–211 207

according to age, health-promotion activism, and/or residentialcontext (urban/rural). We assembled four focus groups containinga total of 25 subjects (six men, 19 women): elderly individuals(>65 years of age) living in a retirement home [elderly focus group(EFG); n = 7], activist users of a Lyon health support group between35 and 65 years of age [user focus group (UFG); n = 7], students ofthe Institute for Industrial Art and Design aged 20 to 25 years[student focus group (SFG); n = 7], and residents of a rural areabetween 40 and 50 years of age [rural focus group (RFG); n = 4].

2.2. Clinical scenarios

We developed a paradigm of physician–patient interactionsthat used three clinical scenarios: a patient with hypertension, anasymptomatic chronic health problem that is neither serious noran emergency; and patients with breast and prostate cancer, whichare potentially serious cancers involving complex therapeuticchoices. These scenarios were developed to encourage betterpatient involvement for men and women. Participants were askedto read the scenarios and to answer the following questionimmediately thereafter: How do you perceive that decisions weremade in these three situations?

2.3. Focus-group interviews

Each focus-group session (average: 2 h) was moderated by anassociate professor from the Department of General Medicine (AM)and a general practitioner with experience with focus groups(MCD). The group observer was a doctoral student in generalmedicine (LC) who made audio recordings of the sessions and tooknotes. The project was supervised by two professors from theHuman and Social Sciences Department of the Lyon 1 University. Asummary was developed at the end of each session to assessparticipants’ agreement. The moderator and observer exchangedtheir preliminary impressions after each session.

2.4. Analysis

The observer transcribed the audio recording of each session toobtain a verbatim report. Each participant was identified by focusgroup and gender when necessary (male = H, female = F). The datawere organized/analyzed from pooled source elements importedfrom NVIVO 8 software (QSR International, Ltd., Southport, UK).Free nodes were created to label the topics and ideas that emergedin the focus-group sessions, in accordance with grounded theory.According to an inductive process, each element of discoursecontent was coded using open coding and then grouped into theappropriate node according to topic. Remarks judged to be off-topic were removed from the corpus. Through repeated study ofthe transcripts, axial coding was used to define relationshipsamong free nodes. These free nodes were grouped into hierarchicalnodes around topics, such as the description of DM, DM models,factors facilitating DM, and obstacles to DM. We conducted atransversal analysis of the topics after the four focus-groupsessions had been carried out. To ensure the internal validity ofresults, the moderator and observer–transcriber conductedanalyses simultaneously for each group without preliminaryconsultation. Analyses were conducted in French. They wereindependently analyzed by the moderators (AM, MCD) and by theobserver–transcriber (LC) and comparisons were then carried out.Similar and consensual results were considered valid.

3. Results

The majority of participants favored the SDM model. Almost allverbatim responses were expressed by young or middle age people

in three focus groups (UFG, SFG, RFG). They described decisionmaking as an interactive process between a physician whoconsiders the patient as a person, and a patient who gives his/her consent freely. They also perceived this process as theinteractive transfer of knowledge between the physician, who ismedically competent, and the patient, who has lay expertise:

‘‘It’s important for the doctor to take the patient into account orthe patient won’t comply with the treatment’’ (RFG2).

‘‘I don’t see what we can do without the patient’s consent’’(RFG1).

‘‘The doctor has skills but we know our body and what we are’’(UFGF4).

‘‘At first we’re not supposed to know enough to make a decision,but once we have the information in hand to make the rightdecision, there’s no reason not to.’’ (Am I an expert on myself?)‘‘I find the word ‘expert’ a bit strong, but why not’’ (SFGF1).

Participants also felt that the decision-making process includeda dialogue in the form of a question–response exchange thatempowered the patient:

‘‘Obviously, we don’t have any medical training and sometimeswe misinterpret what we read. Therefore, I’d go to talk to adoctor to see what he’d say’’ (RFG3).

‘‘I’d go to a doctor and see what he thinks. . .and then I’d choose’’(EFG6).

‘‘If all my questions are answered, that means that we’reimportant, that somehow we’re not just ill, that there’s a personin there’’ (RFG4).

Active patient participation was perceived to increase his/herknowledge and the chance of curing the disease, which wasreassuring from the patient’s perspective:

‘‘The more a patient has to endure what is happening, the lesshe is capable of coping. The more he knows about his disease,the more it would seem he can fight against it’’ (UFGF5).

‘‘Searching for information is reassuring’’ (SFGH3).

Participants felt that the patient could better understand his/her disease and be involved in his/her care by asking forinformation about the disease and receiving objective information(e.g., risk–benefit report, treatment side effects). This reinforcedthe therapeutic alliance:

‘‘A patient, when he’s ill, he takes an interest in his disease. Hetries to gather as much information as possible on himself’’(SFGH2).

‘‘I need to have explanations, on what I have, what it’s going todo to me’’ (UFGF4).

‘‘I’d like to know exactly what the risks are, the side effects’’(RFG3).

A. Moreau et al. / Patient Education and Counseling 87 (2012) 206–211208

‘‘Lots of doctors tend to not say anything about side effectsbecause they think that their patients might not take themedication. I have quite the opposite attitude: when you’re wellinformed, you’re better prepared to react to certain things’’(UFGH2).

‘‘You shouldn’t try to hide things (from the patient), because ifhe insists, you can be sure that he’ll end up doubting the doctor.You have to clarify things’’ (SFGH3).

‘‘If the patient has any doubts, she won’t want to commit tofollowing the care’’ (EFGH2).

The patient could decide whether or not to take medication.Observance of therapeutic regimens was a way for him/her toretain control of the decision-making process:

‘‘There are people who jump at taking a medication. . .or worseyet, some buy the drug and then don’t take it’’ (UFGF5).

‘‘As for me, sometimes I take care of myself by putting the pillsin my pocket’’ (UFGH2).

‘‘For high blood pressure, prevention means also doing thingsother than taking a drug. . .a healthy lifestyle’’ (UFGF5).

Participants felt that evaluating the physician through others’opinions and seeking alternatives were an important part of thedecision-making process:

‘‘A doctor isn’t necessarily good at everything. . .You can go seesomeone else’’ (UFGH2).

‘‘The more serious it is, the more you need to get severalopinions’’ (SFGH2).

‘‘If I can’t trust a doctor, it’s because he wasn’t able to convinceme. . .Either I think he’s not a good doctor or I’m sure that he’smade a mistake and I’ll get another medical opinion somewhereelse’’ (RFG3).

‘‘The thought of taking a life-long treatment makes my hairstand on end. I’d do anything to avoid it. . .by going to see, I don’tknow, maybe someone like an acupuncturist or an osteopath,you know, anyone, rather than take a life-long treatment’’(RFG1).

Trust was the determining factor in this process, as theempathic doctor–patient relationship was perceived to build upover time:

‘‘I think that empathy and trust count enormously for any typeof caregiver. . .You can accept, in the end, a proposal for carefrom someone that you feel empathy for and who has shownhimself to be trustworthy’’ (UFGF4).

‘‘Because we don’t have any medical knowledge. We knowabout our body of course, but besides that there can only betrust, empathy’’ (UFGF4).

‘‘When we see a doctor for the first time, we either trust him orwe don’t. You hit it off, it’s like with people in general: you get afeeling for the person (RFG2).

‘‘As you see the doctor over the years for other consultations,you get a feel for the person’’ (RFG2).

‘‘It’s the only person that you trust your health to, your lifewhen things aren’t going well. Someone who takes care of us fora long time is better. He knows our biological career, so tospeak’’ (SFGF1).

‘‘There’s trust. . .It’s important. . .the shared knowledge, in fact’’(RFG4).

‘‘If you can’t trust, you can’t get better. . .If that’s the case you’rebetter off changing doctors’’ (RFG3).

Participants believed that the doctor–patient relationshipshould allow the patient to feel at ease, which was facilitated bythe physician’s attentive and benevolent listening:

‘‘There’s trust but also the possibility of communicating. Thatmeans you can really feel at ease with your doctor and be able totell him anything’’ (RFG2).

‘‘The doctor needs to be a listener’’ (RFG3).

‘‘And we should feel that they’re not judging us. . .because ifwe’re reserved with a doctor, if you can’t really say what youthink, I think that the doctor can’t take proper care of hispatients’’ (RFG2).

‘‘It’s good to see that someone is attentive to what we think’’(EFG6).

The DM process was perceived to be developed qualitativelythrough nonverbal communication during the exchange:

‘‘The decision belongs to the patient. But this quality oflistening. . .this time taken with me can give me confidence inone or the other of the routes to take. . .You can’t quantify such arelationship. . .a moment of trust, something shared, theexchange of a look’’ (UFGF5). . .‘‘[That’s what] really counts ingetting well’’ (UFGF4).

‘‘It’s the quality of the explanation and the time taken, what Ifeel in the person who is explaining something to me, that’swhat’s going to help me’’ (UFGF5).

Time to think was considered essential in making a decision:

‘‘There are lots of things that we consider urgent, and I believethat it should be a right for everyone to be able to take a fewdays, or even a few weeks, to think’’ (UFGH2).

‘‘When I said, ‘I don’t agree, I want to look for other solutions,’the doctor got hostile with me and said, ‘you’re wrong, you haveto do it, you’re going to be in pain for no good reason,’ to the

A. Moreau et al. / Patient Education and Counseling 87 (2012) 206–211 209

point that finally the only possible response was ‘I’m the onewho’s going to be in pain, not you!’’’ (UFGH2).

Participants felt that the physician should become personallyinvolved in each choice by presenting the options available andproviding advice:

‘‘We need to be guided in making a choice and to really be giventhe information necessary to make a choice’’ (UFGH2).

‘‘The doctor should know how to give his opinion withoutforcing his ideas on us’’ (SFGH2).

‘‘It’s reassuring. . .We can choose on our own because it’s ourdecision but we’re supported in our decision, and we don’t feelall alone’’ (SFGF2).

‘‘In an area we know nothing about, it’s true that his advice isindispensable’’ (SFGH3).

However, participants believed that the patient should feel thatthe decision is his/hers:

‘‘The patient should always feel like he’s making the decisionhimself. And what the doctor says really has to be taken asadvice’’ (SFGH3).

The physician should take the patient’s ideas into consider-ation:

‘‘I kind of have my own ideas too. . .So I don’t necessarily listento the GP, even though I believe he has certain wisdom. But Ihave another’’ (UFGF1).

The physician’s biomedical skills were perceived to promotepatient trust:

‘‘For a big operation, I’d put more trust in someone I know hasgood skills. . .rather than someone who’s nice. When you’re onthe operating table, he isn’t holding a conversation with you,he’s working’’ (SFGH2).

The deliberative process was perceived as leading to thenegotiation of a compromise between physician and patientpreferences:

‘‘Try to find a compromise. . .accept treatment for a certain time,and then review the situation with him’’ (RFG2).

As a last resort, participants felt that the physician shouldsupport the patient’s choices:

‘‘Accompany the patient in whatever choice he makes, even if itisn’t what the doctor thinks’’ (RFG4).

The paternalistic role of the physician was most oftenrejected:

‘‘He shouldn’t let his judgment decide for the patient, becausehe’s not really the one concerned, it’s the patient’’ (SFGF3).

However, many elderly participants preferred a paternalisticmodel, in which the physician decided on a treatment because

she/he had the experience and skills. Like other approaches, thismodel was associated with trust that had been built up over timethrough good advice and shared knowledge:

‘‘I believe that one should trust one’s doctor. . .It’s his job andwe’re not the ones who should decide what we need’’ (EFG2).

‘‘You trust the doctor and that’s all there is to it’’ (EFG6).

‘‘. . .because he’s given good advice’’ (EFG4).

Nevertheless, even within the paternalistic model, doubt andthe need to discuss an issue were perceived to lead the patient toseek other opinions and broaden his/her range of choices:

‘‘If there’s something that doesn’t seem quite right, then we lookfor something else. . .Maybe we’ll find something we hadn’tseen. Or maybe we have an idea and we’d like to force theissue. . .We can always talk about it. . .but it’s always the doctorfirst. . .If you hesitate, go see a specialist’’ (EFG6).

In serious or emergency situations, participants perceived thatthe physician usually made a decision:

‘‘I’ll follow his advice because when you’re ill and especially ifyou have cancer. . .the doctor has the experience necessary tosteer the patient toward the right decision’’ (SFGH4).

‘‘In case of an emergency, I don’t think twice about it, I let themdo what they have to do. The only thing I want is to stop thepain’’ (UFGF4).

Participants described several obstacles that limited autonomyand SDM: the perception of inadequate scientific skills, troublemaking requests, or the fear of knowing:

‘‘They need to have a certain skill level. I’m not trained inmedicine. I have to trust the doctor’’ (UFGF3).

‘‘This is a very difficult relation for me because when I don’tknow the person, I don’t dare speak up. . .I think the doctorknows. . .I’m dying to know too but I don’t ask enough’’ (UFGF3).

‘‘[You can’t decide] alone because we don’t know anythingabout medicine, we didn’t go to school for that. We don’t havethe experience’’ (EFG6).

‘‘I think some people don’t want to know too much becausethey’re afraid of knowing. They need to hide things fromthemselves’’ (SFGF2).

4. Discussion and conclusion

4.1. Discussion

The majority of subjects in this study preferred the SDM model.Preference for the SDM model is most often associated withyounger patients, within the context of psychosocial problems,chronic disease, or preventive procedures [5,13,14]. Elderlypatients are less involved in SDM [15]. The hypothesis that

A. Moreau et al. / Patient Education and Counseling 87 (2012) 206–211210

patients’ attitudes toward DM might depend on age and health-promotion activism was, as a whole, confirmed by our results.Women from a residential rural context (RFG) had similar opinionsabout SDM as participants of user health support group (UFG)because they belong to the same activist, middle-aged social group.Elderly people from the EFG predominantly favored the paternal-istic model.

Charles et al.’s [1] description of three DM models formed thetheoretical background of this study. In revisiting the SDM model,the authors emphasized the importance of flexibility in physicians’structuring of the DM process [16]. They described the variousstages in DM as an information exchange between the patient’s layperspective and the physician’s biomedical perspective. Charleset al. have also described the interactional nature of thedeliberation between patient and physician preferences. Ourstudy reinforced the perceived importance of flexibility andunderscored the intermediate, partial, or gradual overlapping ofthe three DM models, which are not separated by rigid boundaries.An elderly patient may prefer the paternalistic model whilewishing to be informed or may prefer to deliberate with his or herphysician and request other opinions as an ‘‘informed consumer’’in a sort of ‘‘informed’’ or ‘‘enlightened neo-paternalism.’’ Onestudent (SFGH4) and one activist (UFGF4) expressed resistance tothe SDM model, and justified their preference for a paternalisticdimension to decision making in a context of serious or emergencysituations. The power of the medical professional can be perceivedas constructive and beneficial [17].

Most studies have recognized patients’ need for informationregardless of DM model, even if the patient cannot make anindependent decision [15,18,19]. Our results indicated thatinformation exchange by question–response was perceived toreinforce the therapeutic alliance and allow the patient to transferknowledge, better understand the situation, and be an activeparticipant in his/her cares. High-quality information shouldaddress daily preoccupations, patients’ needs, and the optimiza-tion of quality of life, rather than consist merely of professionalobservance [20].

The patient-centered care provides a second clinical frameworkwith six key components: exploring the disease and the illnessexperience, understanding the whole person from a biopsychoso-cial perspective, finding common ground, enhancing the doctor–patient relationship to create a therapeutic alliance, being realistic,and incorporating prevention and health promotion [21,22]. Therelationships between the patient-centered care and SDM have notbeen fully defined [10,11]. Generally, the principles of SDMcorrespond to finding common ground, one of the six componentsof the patient-centered care [12]. However, our results show thatSDM cannot be reduced to this single dimension of the patient-centered care. SDM requires a high-quality relational process, anassessment strategy, and a shared intervention that takes intoaccount the patient’s preference for information and participationin treatment decisions [10]. SDM should also correspond withpatient and physician beliefs about shared involvement andpreferences for interpersonal behavior [18]. Good and lengthydoctor–patient relationships, physicians’ technical expertise, andphysicians’ interest in and respect for their patients are factors thatfacilitate the provision of information and discussion of choices[23]. Trust in the physician’s competence gives patients confidencein the DM process. Such trust is reinforced by open communicationand emotional support, rather than by the provision of technicalinformation [24]. Patients’ self-confidence and self-efficacy, keyfactors in their involvement in the DM process, depend on trust ofphysicians [10]. Taking into account the disparity betweenphysician and patient roles, the patient’s autonomy is valuedwhile she benefits from the physician’s expertise through an opendiscussion of the patient’s preferences and the ability to make an

informed choice [25]. SDM can be considered as an integrativemodel of DM [10], if it is integrated into the more global clinicalframework of the patient-centered care (PCC). Compared with the‘‘good’’ SDM model, paternalistic or informed models must not bedisregarded or considered ‘‘faulty’’ if there is a common groundbetween the patient’s perspective (in his own biopsychosocialcontext) and a realistic doctor trying to maintain a therapeuticalliance.

A literature review [10] found that values/preferences andpresentations of options comprised more than half of theconceptual definitions of SDM appearing in the literature. Inaddition to these two elements, our study found that patientsincluded other conceptual categories in their definitions of SDM,including partnership, patient participation, benefits/risks, delib-eration/negotiation, doctor knowledge/recommendations, mutualagreement, process/stages, information exchange, and flexibility.

Our study incorporated conceptual definitions that appear inless than 10% of published studies [10], such as physicians’acknowledgment of patient autonomy through their support ofpatients’ choices, even when they disagree. A ‘‘patient centered’’physician should adopt an ‘‘informed neo-paternalistic’’ attitude tosupport patients’ choices, even if it seems politically incorrect [18].Physicians should aim to share the patient’s preferred DM model,rather than imposing an ideal form of SDM on the patient.

Our study also broaches another conceptual definition regardedas problematic and rare: acknowledging the expertise of bothdoctor and patient (‘‘The doctor has skills but we know our bodyand what we are’’ UFGF4). Some physicians resist or doubt the ideathat an informed patient can have any expertise [26,27], even insituations of true patient expertise, such as in type 1 diabetes [28].This doubt risks the loss of trust, the disruption of the therapeuticalliance, and the accentuation of confrontational attitudes. Behindthis resistance lies the idea of patient incompetence, which wouldmake his/her decisions inappropriate. The recognition of patientcompetence and expertise should be based on his/her individualexperience of a disease and his/her body, rather than on his/herknowledge about the disease [29].

Our participants described other aspects of DM that are seldomfound in the literature, such as the importance of non-verbalcommunication and affective implication. Patient involvementshould be explicit, but can also be implicitly expressed throughqualitative nonverbal communication based on trust [30]. DM isbased not only on information (rarely complete), but rather on anumber of factors (emotional, esthetic, social, value-oriented). TheDM process is thus naturalistic and heuristic in complex real-lifesituations [29]. Patients feel more concerned by the affectiveaspect of the decision than by the technical aspect of the treatment[17]. Physicians who involve themselves affectively in therelationship and give more information achieve greater patientinvolvement [15]. Patients value physicians who take time todiscuss and reflect on a choice [31]. However, realistic timemanagement is part of the patient-centered care and is a limitingfactor for DM [20].

4.2. Conclusion

In this study, subjects perceived DM as a deliberativeinteraction with the physician and as information exchange inthe context of the patient-centered care. Participants felt thatpatients should assess physicians, request other opinions, and seekalternatives, even within the expectation of a paternalistic model.Trust, the quality of non-verbal communication, and time to thinkwere facilitating factors in this process, and required a high-qualityrelationship that had been established over time. Serious andemergency situations, the perception of inadequate scientificcompetence, trouble making requests, and the fear of knowledge

A. Moreau et al. / Patient Education and Counseling 87 (2012) 206–211 211

about one’s medical condition were found to be obstacles limitingpatient autonomy and SDM.

4.3. Practice implications

SDM can integrate the paternalistic and consumerist modelswithin a context of the patient-centered care. This integrationimplies the presence of exchanges that consider patients’ andphysicians’ expertise. This approach combines physicians’ bio-medical and relational skills through listening and informing asbest as possible. Physicians thus become involved in providingadvice and supporting the patient in making decisions (inpaternalistic, informed, or shared context) in a trusting atmo-sphere.

Conflict of interests

No funding was obtained for this analysis. The authors thankthe Lyon College of General Practitioner Teachers (CLGE) forfunding the English translation. The authors have no conflicts ofinterest to declare.

Acknowledgments

The author thanks Evelyne Lasserre and Axel Guioux (Anthro-pologists of the service of human sciences, University ClaudeBernard Lyon 1) and Pr. J.L. Terra (Professor of Psychiatry,University Claude Bernard Lyon 1) for their advice.

The authors would like to thank Pr. Francois Gueyffier and KentNeal (supported by the French Cochrane Center) at the ClinicalInvestigation Center of Lyon and Pr. J.F. Mornex at Unit of ResearchUMR 754 University Claude Bernard Lyon 1 for helping proofreadthe manuscript.

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