Ingredients for a Successful Evidence-based a Qualitative Study. Barriers to the Evidence-based Patient Choice (EBPC) vs EBM. Paper Study. Evidence based medicine interest.

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Barriers to the Evidence-based Patient Choice (EBPC) vs EBM. Paper Study. Evidence based medicine interest.
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  Social Science & Medicine 56 (2003) 589–602 What are the ingredients for a successful evidence-basedpatient choice consultation?: A qualitative study Sarah Ford*, Theo Schofield, Tony Hope The Ethox Centre, Institute of Health Sciences, University of Oxford, Old Road, Headington, Oxford OX3 7LF, UK  Abstract The evidence-based patient choice (EBPC) approach is one of a number of newly emerging templates for medicalencounters that advocate evidence-informed choice and shared decision-making. These models emphasise respect forpatient preferences for involvement in health care decisions and advocate the sharing of good quality evidence-basedinformation. In the medical consultation EBPC involves providing patients with evidence-based information in a waythat facilitates their ability to make choices or decisions about their health care. Whereas the key principles of shareddecision-making have been conceptualised, so far, no qualitative investigations have been undertaken to establish thekey components of an EBPC consultation. Therefore, a series of semi-structured interviews were carried out with keyinformants to identify the elements and skills required for a successful EBPC consultation to occur. The interviews wereconducted with purposively selected UK general practitioners ( n ¼ 11), hospital doctors ( n ¼ 10), practice nurses( n ¼ 5), academics ( n ¼ 11) and lay people ( n ¼ 8). Qualitative analysis of participants’ responses was conducted usingthe constant comparative method. Six main themes emerged from the data, these were research evidence/medicalinformation, the doctor–patient relationship, patient perspectives, decision-making processes, time issues andestablishing the patient’s problem. All respondents placed importance on doctors and patients being well informedand appraised of the latest available medical evidence. There was a general view that evidence-based informationregarding diagnosis and treatment options should be shared with patients during a consultation. However, there wereno suggestions as to how this might be achieved in practice. Participants’ opinions relating to which model of decision-making should be adopted ranged from favouring an informed choice model, to the view that decision-making shouldbe shared equally. Similarly, there was no clear view on how much guidance a doctor should offer a patient duringdecision-making concerning the most appropriate treatment option for that patient. r 2002 Elsevier Science Ltd. Allrights reserved. Keywords: Evidence-based medicine; Patient-centred care; Shared decision-making Introduction The term ‘‘evidence-based patient choice’’ (EBPC)was first described by Hope (1996) as the mergingtogether of two important modern movements inwestern health care, namely evidence-based medicineand patient-centred care. This approach is one of severalnewly emerging models of the medical encounter whichadvocate evidence informed patient choice (Entwistle,Sheldon, Sowden, & Watt, 1998; Towle & Godolphin,1999) and shared decision-making (Braddock, Edwards,Hasenberg, Laidley, & Levinson, 1999; Charles, Gafni,& Whelan, 1999; Elwyn, Edwards, Kinnersley, & Grol,2000). EBPC is not limited to what has been termed the‘‘neglected second half of the consultation’’ (Elwyn,Edwards, & Kinnersley, 1999), like most other ap-proaches it encompasses the whole consultation of which an important component is patient involvementin decision-making.Evidenced-based medicine (EBM) requires the use of current best evidence to make decisions about the careof individual patients (Sackett, Straus, Richardson, *Corresponding author. Tel.: +44-1865-227049; fax: +44-1865-226938. E-mail address: sarah.ford@ethox.ox.ac.uk (S. Ford).0277-9536/03/$-see front matter r 2002 Elsevier Science Ltd. All rights reserved.PII: S 0277 -9536(02 )0 0056-4  Rosenberg, & Haynes, 2000). Clinical interventions arerecommended on the strength of evidence for theireffectiveness derived mostly from randomised-controlledtrials and systematic reviews. Five basic tenets of EBMhave been identified:1. clinical decisions should be based on the bestavailable scientific evidence,2. the clinical problem determines the evidence to besought,3. identifying the best evidence involves epidemiologicaland biostatistical ways of thinking,4. conclusions based on the available evidence areuseful only if put into action for individual patientsor for population health care decisions,5. performance should be constantly evaluated (David-off, Haynes, Sackett, & Smith, 1995).However, in this biomedical approach the individualqualities, needs and preferences of patients have tendedto be neglected as relevant factors in the decision-making process (Bensing, 2000). Whilst, EBM addressesthe biomedical perspective of diagnosis, mostly from adoctor-centred paradigm (Jacobson, Edwards, Granier,& Butler, 1997), doctors also need evidence that isderived from a patient-centred paradigm that takes intoaccount the personal and contextual elements of decision-making in practice. Patient-centred medicine,is derived from a humanistic, biopsychosocial perspec-tive and combines ethical values on the ‘‘ideal doctor’’,with psychotherapeutic theories on the facilitation of patients’ disclosure of concerns and negotiation theorieson decision-making (Bensing, 2000). This model of careplaces a strong emphasis on patient participation inclinical decision-making by taking into account thepatient’s needs and preferences. Therefore, in order forcognitively competent patients to have the power tomake evidence-based choices, as well as being evidence-based, the medical consultation must be ‘‘patient-centred’’. Providing patients with evidence-based knowl-edge should enhance their power and aid the develop-ment of an increasingly effective patient-centred healthcare system (Hope, 1996). However, there is a need toensure that evidence-based information is conveyed topatients in a way that will increase their understandingand enable them to make informed choices about theirtreatment and management. In the medical consultation,evidence-based patient choice requires providing pa-tients with good quality information to facilitate theirability to make choices or decisions about their healthcare. The original theory combines evidence-basedmedicine with patient-centred care, so that informationthat is of value and personal importance to patientswhen making choices (e.g. process of delivery of care) isconsidered in parallel with scientific evidence-basedinformation. However, the term ‘‘evidence-based’’ isincreasingly becoming outdated as consensus grows thatEBM should acknowledge multiple dimensions of evidence including practical evidence based on indivi-duals’ interpretation of experience (Buetow & Kenealy,2000). Therefore, evidence-based patient choice mustembrace a broader definition of EBM that includesevidence produced outside science. The srcins of patient choice The concept of ‘‘patient choice’’ originates fromthe doctrine of informed consent. In English and USlaw a competent person has a legal right to refusetreatment (even life saving). Valid consent is achievedonly if the individual concerned has been given therelevant information. Over the last 20 years, medicalethicists have stressed the importance of the principle of patient autonomy (Veatch, 1982; Brody, 1985; Dworkin,1988; Quill & Brody, 1996). This emphasises thatpatients should be in a position to choose whether toaccept an intervention or not as part of their generalright to determine their own lives (Hope, 1996). Acentral ethical principle behind evidence-based patientchoice is that the information is being given in orderto enhance choice. Patient choice goes beyond consentand involves the patient in the decision-makingprocess. However, the move towards increasing patientinvolvement is not driven simply by a theoreticalconcern for respect for patient autonomy. Rather, it isa recognition of the fact that individuals differ both inwhat they value and in their propensity to take risks(Hope, 1996). Trends in Western health care Models of shared decision-making and EBPC reflect agrowing trend in health care towards patient empower-ment and greater patient choice (Department of Health,2000). This has been fostered by the increasing patientaccess to information about treatments and the con-sumerist trends in modern society (Ballard-Reisch, 1993;Elwyn et al., 1999). Over the last 20 years or so there hasbeen a call for more patient choice and personal controlin medical care (Reiser, 1993). Current National HealthService (NHS) initiatives advocate ‘‘active partnerships’’between health professionals and patients (NHS Execu-tive, 1996) and the improvement of information to helppatients choose between options (NHS Executive, 1995).Nowadays, most theorists acknowledge that unilateraldecision-making by doctors is unacceptable (except incertain situations, for example, when a patient iscomatose or in urgent need of life-saving action). Theold paternalistic models of doctor–patient relations havebeen rejected by policy makers, and medical academicsin favour of more equitable and collaborative relation-ships characterised by informed choice. There is a S. Ford et al. / Social Science & Medicine 56 (2003) 589–602 590  growing consensus that sharing decisions is desirable onhumanistic grounds alone (Guadagnoli & Ward, 1998). Benefits of involving patients There is also empirical evidence that giving patientsinformation and involving them in decisions about theirhealth care can result in beneficial psychological andphysical outcomes. For example, enhanced patientsatisfaction Roter (1983), adherence to treatment plans(Janis, 1982), greater confidence in health care recom-mendations (Brody, 1980), psychological adjustment toillness (Fallowfield, Hall, Maguire, & Baum, 1990) andsymptom resolution (Bass et al., 1986). It has also beenfound that if patients are actively involved in makingdecisions about their care, physiological outcomes suchas diabetic control can be improved (Greenfield,Kaplan, Ware, Yano, & Frank, 1988). Further evidencesuggests that allowing patients to choose their medicaltreatment can enhance psychological well-being (Ash-croft, Leinster, & Slade, 1986; Fallowfield et al., 1990,1994).In her comprehensive review of health outcomes,Stewart (1995) concluded that four key dimensions of communication were related to positive patient out-comes (emotional health, symptom resolution, functionand physiological health): * the provision of clear information, * questions from the patient, * willingness to share (discuss) decisions, * agreement between patient and doctor about theproblem and the plan.There is also evidence that giving patients informationabout the choices open to them can sometimes lead tofewer prescriptions for specific drugs such as warfarin(Protheroe, Fahey, Montgomery, & Peters, 2000) andless demand for some surgical treatments as in the caseof benign prostatic hyperplasia (Barry, Fowler, Mulley,Henderson, & Wennberg, 1995).However, there are other studies that show thatalthough patients prefer patient-centred care, it does notnecessarily enhance physiological outcome. For exampleKinmonth, Woodcock, Griffin, Spiegal, & Campbell(1998) carried out an intervention study to assess theeffect of additional training of practice nurses and GPs(for abbreviation see Fig. 1) in patient-centred care onoutcomes of patients with newly diagnosed type 2diabetes. In this study patients in the intervention groupreported better communication with doctors, greatertreatment satisfaction and wellbeing than the compar-ison group. However, their body mass index wassignificantly higher as were triglyceride concentrations.There is a clear need for more robust studies toinvestigate the effects of patient involvement in differentdisease groups on a variety of health care outcomes,including those of a psychological, physiological andfinancial nature. Patient preferences for evidence-based information Little is known about patients’ preferences forevidence-based information during consultations. Thelimited work in this area suggests that for someconditions, the majority of patients value being giveninformation about the effectiveness of treatment andcare options (Wagner, Barrett, Barry, Barlow, & Fowler1995). Inevitably patient preferences are increasinglybeing influenced by the consumerist trends in modernsociety which, in turn, have fostered better access tomedical information. Developments in Britain such aslocal consumer health information services (Sheppard,Charnock, & Gann, 1999) have improved awareness of,and access to, evidence-based consumer health informa-tion. More recently, innovations such as the recentlylaunched National Electronic Library for Health(NeLH) (Muir Gray & de Lusignan, 1999), now providehealth professionals and patients with easy access to themost up-to-date evidence of the effectiveness of health-care interventions. Not surprisingly, patients are becom-ing increasingly better informed about health care issuesand expect to be given comprehensive informationconcerning their diagnosis, prognosis and treatmentoptions (Jenkins et al., 2001). Patient involvement in health care Despite the current trends that advocate greaterpatient involvement in health care, whether patientsactually want this is yet to be conclusively demonstrated.For example, Savage and Armstrong (1990) conducted astudy involving 359 randomly selected patients consult-ing with one general practitioner to compare the effectof directing and sharing styles of consultation on patientsatisfaction. The authors found that patients in thedirective group with self-limiting problems or chronicconditions and those receiving a prescription, reportedsignificantly higher levels of satisfaction on severaloutcome measures. These included: satisfaction withthe GPs perceived understanding of their problem andthe explanation they received.The results of a study investigating Australian, UKand US preferences for participation in medical deci-sion-making suggested that mutuality was the preferredmethod of decision-making for participants in all 3countries (Smith, Garko, Bennett, Irwin, & Schofield,1994). The authors found that if the question was asked,‘‘Do patients prefer to decide for themselves or delegatedecisions to their doctors?’’ participants chose todelegate, but if respondents were asked if they preferred joint decision-making, delegating or deciding theypreferred joint decisions. S. Ford et al. / Social Science & Medicine 56 (2003) 589–602 591  Most of the empirical research evaluating patientpreferences for participation has been conducted inNorth America using ‘‘high stake’’ scenarios, forexample, decisions concerning treatment for cancer.Therefore, it is not known whether these findings can beapplied to other patient populations and differentmedical contexts, such as patients in general practice.Much of the research is based on surveys using differentassessment measures which makes comparisons difficult(Deber, 1994a,b; Guadagnoli & Ward, 1998). Studiesconducted using hypothetical questions or contrivedscenarios may not truly reflect patients’ preferencesduring a real clinical interview.The desire to be involved (or not) in decision-makingmay depend on the type and severity of a patient’scondition. For example, Beaver et al. (1996) surveyed150 women recently diagnosed with breast cancer usinga role-preference card-sort (Degner & Sloan, 1992)which consisted of five cards with a written statementand cartoon depicting increasing levels of patientinvolvement. The women were asked to choose theirpreferred decision-making role from all possible pairingsof the five cards (ten in total). Results showed that 20%wanted an active role in deciding their treatment, 28%preferred a joint decision, and just over half (52%)wanted their surgeon to decide for them. In contrast acontrol group of patients with benign breast diseasewanted to share responsibility for decision-making withthe surgeon. The cancer patients were assessed at anearly stage and had no definite knowledge about theirtype of cancer, prognosis or treatment. Therefore, thislack of information may have contributed to theirreluctance to be more involved in the decision-makingprocess. In an extension of the above study (Beaver,Bogg, & Luker, 1999) a comparison of the decision-making preferences and information needs of colorectal( n ¼ 48) versus breast cancer patients ( n ¼ 150) wasconducted. Once again a decisional role preference cardsort was used and an information needs questionnaire. Itwas found that the majority (78%) of the colorectalpatients preferred to play a passive role in decision-making, in contrast to 52% of the breast cancer patients.Of note is the fact that both groups had similarinformation needs relating to cure, spread of diseaseand treatment options.The majority of patients’ desire for information isstronger than their desire to be involved indecision-making (Ende, Kazis, Ash, & Moskowitz,1989; Strull, Lo, & Charles, 1984; Degner et al., 1997;Beaver et al., 1999). Furthermore, many patientswould like to receive more information than theycurrently do from health care professionals (AuditCommission, 1993; Meredith et al., 1996). Whetherthey wish to be involved in decision-making or not,patients increasingly expect to be told their diagnosisand details concerning pathophysiology, treatmentoptions and prognosis (Laine & Davidoff, 1996;Meredith et al., 1996).The purpose of this qualitative study was to identifythe elements and skills required for a successful EBPCconsultation to occur. We stress that we were testingreactions to a theoretical concept rather than to theactual existence of the EBPC consultation. The keyprinciples of shared decision-making have already beenconceptualised (Charles et al., 1997; Towle & God-olphin, 1999). However, no qualitative investigationshave yet been undertaken to establish the key compo-nents of an EBPC consultation. Therefore, a series of semi-structured interviews were carried out with keyinformants in an attempt to establish these criteria. Methods and sample Purposeful sampling was used to recruit participantswho were anticipated to be good informants, i.e., thoselikely to have an interest in patient involvement indecision-making, evidence-based medicine and patient-centred care. Those invited to take part included UKgeneral practitioners, hospital doctors, academics, laypeople and nurse practitioners. The GPs and hospitaldoctors were medical student tutors affiliated to the UKOxford medical communication skills teaching pro-gramme. Academics were established commentators onpatient involvement in health care. Lay people wererecruited through the Oxfordshire Community HealthCouncil and had keen interests in issues connected withpatient empowerment. Nurse practitioners were selectedfrom the surgeries of participating GPs.All potential participants received a letter whichincluded basic information about the concept of EBPCand which invited them to take part in semi-structuredinterviews. The explanation of EBPC was presented asfollows:-In the medical consultation, EBPC means providingpatients with evidence-based information to enablethem to make choices or decisions about their healthcare. By combining evidence-based medicine withpatient-centred care, information that is of value andpersonal importance to patients is considered inparallel with scientific evidence-based information aspart of the decision-making process. We would likeyour views on the elements and skills needed forEBPC to take place in the medical consultation.Those who were willing to take part received a ‘‘pre-interview prompt sheet’’ one week before being inter-viewed. This was to enable them to familiarise them-selves with the concept of evidence-based patient choiceand make notes on the implications of this approach. S. Ford et al. / Social Science & Medicine 56 (2003) 589–602 592
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