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Social Science & Medicine 72 (2011) 1085e1095

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Social Science & Medicine

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Measuring patient-centered communication in cancer care: A literature reviewand the development of a systematic approach

Lauren A. McCormack a,*, Katherine Treiman b, Douglas Rupert a, Pamela Williams-Piehota a,Eric Nadler c, Neeraj K. Arora d,1, William Lawrence e,2, Richard L. Street Jr. f,3

aHealth Communication Program, RTI International, 3040 Cornwallis Road, RTP, NC 27709, USAbHealth Communication Program, RTI International, 6110 Executive Blvd, Suites 902 & 415, Rockville, MD 20852-3907, USAc Thoracic/Head and Neck Research, Charles Sammons Cancer Center, Baylor University Medical Center, 3500 Gaston Ave, Dallas, TX 75246, USAdOutcomes Research Branch, ARP, DCCPS, National Cancer Institute, 6130 Executive Blvd, MSC 7344, EPN Room 4005, Bethesda, MD 20892-7344, USAeCenter for Outcomes and Evidence, Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 20850, USAfDepartment of Communication, Texas A&M University, College Station, TX 77843-4234, USA

a r t i c l e i n f o

Article history:Available online 4 March 2011

Keywords:Patient-centered communicationConceptual frameworkMeasurementCancer careReviewUSA

* Corresponding author. Tel.: þ1 919 541 6277.E-mail addresses: Lmac@rti.org (L.A. McC

(K. Treiman), drupert@rti.org (D. Rupert), ppiehota@Eric.Nadler@oncologytoday.com (E. Nadler), aroranwilliam.lawrence@ahrq.hhs.gov (W. Lawrence), r-stre

1 Tel.: þ1 301 594 6653; fax: þ1301 435 3710.2 Tel.: þ1 301 427 1517; fax: þ1301 427 1520.3 Tel.: þ1 979 845 0209; fax: þ1979 845 6594.

0277-9536/$ e see front matter � 2011 Elsevier Ltd.doi:10.1016/j.socscimed.2011.01.020

a b s t r a c t

Patient-centered communication (PCC) is a critical element of patient-centered care, which the Institute ofMedicine (Committee on Quality of Health Care in America, 2001) promulgates as essential to improvinghealthcare delivery. Consequently, the US National Cancer Institute’s Strategic Plan for Leading the Nation(2006) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCCexists, and stakeholders continue to embrace different conceptualizations and assumptions about how tomeasure it. Our approach was grounded in the PCC conceptual framework presented in a recent USNational Cancer Institute monograph (Epstein & Street, 2007). In this study, we developed a comprehensiveinventory of domains and subdomains for PCC by reviewing relevant literature and theories, interviewinga limited number of cancer patients, and consulting experts. The resulting measurement domains areorganized under the six core functions specified in the PCC conceptual framework: exchanging informa-tion, fostering healing relationships, recognizing and responding to emotions, managing uncertainty,making decisions, and enabling patient self-management. These domains represent a promising platformfor operationalizing the complicated PCC construct. Although this study focused specifically on cancer care,the PCC measurements are relevant to other clinical contexts and illnesses, given that patient-centered careis a goal across all healthcare. Finally, we discuss considerations for developing PCC measures for research,quality assessment, and surveillance purposes.

United States Department of Health and Human Services, National Institutes of Health, National CancerInstitute (2006). The NCI Strategic Plan for Leading the Nation: To Eliminate the Suffering and Death Dueto Cancer. NIH Publication No. 06-5773.

� 2011 Elsevier Ltd. All rights reserved.

Introduction

In 2001, the Institute of Medicine in the USA called for improve-ment in six areas of healthcare delivery, including the recommen-dation that medical care should be patient centered, meaning care

ormack), Ktreiman@rti.orgrti.org (P. Williams-Piehota),@mail.nih.gov (N.K. Arora),et@tamu.edu (R.L. Street).

All rights reserved.

should be responsive to individual patient preferences, needs, andperspectives and ensure that patient values guide clinical decisions.Since the Institute of Medicine issued their reportdCrossing theQuality Chasm (Committee on Quality of Health Care in America,2001)dmyriad clinical, policy, and research initiatives have beenlaunched topromote the study, advancement, and implementationofpatient-centered care (Arora, Street, Epstein, & Butow, 2009).Although healthcare stakeholders widely advocate patient-centeredcare, there is little consensus on what patient-centered care is andhow it is achieved (Cegala & Street, 2009).

One of the more problematic aspects of assessing patient-centeredness is the conceptualization and measurement of patient-centered communication (PCC), which is arguably a primary meansthrough which patient-centered care is accomplished. In this article,

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we present a brief critique of current approaches for measuring PCCin patienteclinician interactions. We then propose a conceptualframework describing a functional approach for assessing PCC. Wepresent the results fromour study, which identified key domains andsubdomains of PCC that can serve as the foundation for future PCCmeasure development. Finally, we discuss considerations for devel-oping PCC measures for research, quality assessment, and surveil-lance purposes. This paper seeks to lay the groundwork forestablishing best practices related to patienteclinician communica-tion. Measuring actual performance against a recognized gold stan-dard is one way to assess quality of care (National Quality Forum,2010).

Approaches to measuring PCC

Although experts define patient-centered care differently (e.g.,Bensing, 2000; Epstein et al., 2005; Mead & Bower, 2000; Stewart,2001), most conceptualizations share the following key compo-nents: address the patient’s perspective; understand the patientwithin his or her psychosocial context; involve the patient in care tothe extent he or she desires; reach a shared understanding of theproblem and agreement on the treatment plan; andmake decisionsthat are based on the best clinical evidence, consistent with patientvalues, and feasible (Epstein & Street, 2007). Although existingcommunication measures tap into elements of patient-centered-ness, most do not comprehensively assess PCC.

First, with a few exceptions, communication measures are notgrounded in a comprehensive conceptual model of PCC and addressonly specific elements of the communication interaction. Forexample, some measures address shared decision-making (Degner,Sloan, & Venkatesh, 1997), empathy (Mercer, McConnachie,Maxwell, Heaney, & Watt, 2005), patient participation (Street &Millay, 2001), quality of physician communication (Galassi,Schanberg, & Ware, 1992), physician information giving (Waitzkin,1985),and patient autonomy support (Williams, McGregor,Zeldman, Freedman, & Deci, 2004). Although each can be consid-ered a component of PCC, separately, they are insufficient asa comprehensive PCC measure.

Even comprehensive coding schemes often do not explicitly statetheir theoretical underpinnings, or, if they do, they are not groundedin a model of patient-centeredness. For example, both the RoterInteraction Analysis System (RIAS) (Roter & Larson, 2002) and Davis’sverbal coding system (Davis, 1968) were originally derived fromBales’s (1950) Interaction Process Analysis system, a method forcoding problem solving in small group interactions. The MaastrichtHistory-Taking and Advice Checklist communication assessment(van Thiel, Kraan, & van der Vleuten, 1991) identifies a number ofcommunication skills for medical education, but its theoreticalgrounding is not clear.

Four exceptions produce composite and dimensional PCC scores.The Measuring Patient-Centered Communication scale (MPCC)(Stewart, Brown, Weston, McWilliam, & Freeman, 1995) identifiesthree components of PCC: exploring the patient’s illness experience,understanding the patient as a whole person, and finding commonground. Typically, coders listen to a recorded consultation and ratethe degree to which each component occurred. The Street, O’Malley,Cooper, andHaidet (2008)measure has observers or patients rate theextent to which clinician communication was informative,supportive, and partnering. The Euro-Communication measure(Mead & Bower, 2000) has observers rate clinician behavior on fivedimensions: involving the patient in problem definition, involvingthe patient in decision-making, picking up patient “cues,” exploringissues of patient self-efficacy and ambivalence, and being responsive.The Verona Patient-Centered Communication Evaluation scale(VR-COPE) (Epstein et al., 2005; del Piccolo, Mazzi, Scardoni, Gobbi, &

Zimmerman, 2008) is grounded in Stewart et al.’s (1995), Mead andBower’s (2000), and Epstein et al.’s (2005) conceptual approachesto patient centeredness and identifies nine communication strategies(e.g., active listening, completion of patient’s agenda, exploration ofpatient’s expectations) for accomplishing PCC.

However, all four measures are limited in that they assess onlythe clinician’s communication, thus implicitly assuming PCC isa clinician attribute. Recent critiques, however, argue that patient-centeredness must also characterize patients (and families), thecommunicative encounter, and the healthcare system (Committeeon Quality of Health Care in America, 2001; Epstein & Street,2007). Hence, a comprehensive measure of PCC should assess thepatient’s (and family members’ or other caregivers’) communica-tion as well as the clinician’s and the qualities of the interactionitself that are jointly created by all parties (e.g., negotiation,consensus building).

A second limitation of current communication measures is theassessment method. The most common quantitative methods areobservational coding and patient self-report. For example, somestudies assess patients’ perceptions of the clinicians’ and theirown communication (e.g., Gordon et al., 2006; Street, 1991).Although these measures tap patients’ perspectives about PCC,they are evaluative in nature (e.g., “the doctor’s explanations wereeasy to understand,” “the doctor was respectful”), provide littleinformation on specific clinician and patient behaviors that led tothe perceptions, and are subject to perceptual biases (e.g., haloeffects, social desirability) (Cegala & Street, 2009; Epstein et al.,2005).

Conversely, observational methods of assessing PCC typicallytrain coders to review audio or video recordings of medicalconsultations and categorize physician and patient communication(e.g., Roter & Larson, 2002; Stewart et al., 1995; Stiles & Putnam,1992; Street & Millay, 2001). These approaches are more objectivethan patient self-report because they identify specific behaviorsand can be summarized to create a profile of the consultation orcoded along a timeline so that investigators can sequentially assesscommunication. Observational methods, however, provide littleinformation on the salience of the communicative act. For example,a clinician’s statement of “Your blood pressure is 120 over 80”would be coded as information-giving; it may have little signifi-cance for a person with normal blood pressure but be highlyimportant to a hypertensive patient.

A third limitation of current PCC methods is that results areinconsistent across measures. Patient self-reports often do notcorrespond to observer assessments of communication, especiallyif the assessments are confounding descriptive versus evaluativeaspects of communication (Stiles, 2002). A patient’s perception ofclinician informativeness may not relate to an observationalmeasure of physician information-giving (Street, 1992). A patientmay self-report actively participating in shared decision-making,yet observational evidence suggests the opposite (Saba et al., 2006).In addition, although a variety of assessment methods may providea more comprehensive assessment of communication skills (Duffyet al., 2004), from a research perspective different measures maylead to different conclusions. For example, a consultation may bepatient centered by one coding system yet doctor centered byanother because the systems have different assumptions aboutwhat constitutes patient-centeredness and how to measure it(Rimal, 2001).

Research has richly described communication in medicalencounters, but much remains to be done to provide meaningful,conceptually grounded measurement of PCC and to develop toolsthat can both describe and evaluate it. The fact that cancer care isoften provided by a team of clinicians and para-professionalsfurther complicates measuring the communication.

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A conceptual framework for PCC in cancer care

Our approach to measuring PCC is grounded in the conceptualframework in the US National Cancer Institute’s recent monographPatient-Centered Communication in Cancer Care: Promoting Healingand Reducing Suffering (Epstein & Street, 2007) (Fig. 1). We takea functional approach to assessing PCC for several reasons: (1) it tapsinto the “work” of communication, an appropriate metaphor giventhat communication in healthcare aims to accomplish certain tasks(e.g.,make treatment decisions, build the relationship); (2) it extendsbeyond what patients and clinicians do as individuals and addressescharacteristics of the interaction itself (e.g., exchanging information,deliberating); and (3) it allows us to separate the assessment of thecommunicative processes (i.e., what the communicators are doing)from the evaluation of that process (e.g., patient satisfaction, ratingsof quality). These communication functions are critically important incancer care, where patients face a potentially life-threatening illness,experience long periods of uncertainty, and often have to managecomplex care involvingmultiple providers and treatmentmodalities.

Methods

This study aimed to develop a comprehensive inventory of thedomains and subdomains that characterize the six functions of PCCin cancer care. We synthesized information from the followingthree activities: we reviewed the literature in the US NationalCancer Institute monograph (Epstein & Street, 2007) and supple-mental literature, conducted a small qualitative study involvingobservations of medical encounters and in-depth interviews withcancer patients, and consulted and held a scientific symposiumwith experts in the field. These methods reflect both a top-downapproach based on theoretical considerations and the literature

Fig. 1. National Cancer Institute Framework

and a bottom-up approach based on findings from the primary datacollection and real-world clinical experience. Together, they ensurea robust conceptualization of the PCC functions.

Updated literature review and theoretical considerations

To supplement the extensive National Cancer Institute mono-graph literature review, we identified relevant literature published in2006e2007, which was too recent to be captured in the monograph.We searched English-language records in PubMed, PsycINFO, andCommunication & Mass Media Complete databases using Booleankeyword searches. The following terms were combined with canceror neoplasms or leukemias: communication behavior, informationseeking, patient provider communication, patient-centeredcommunication, and decision-making communication.

We retrieved a total of 315 articles and reviewed abstracts toidentify those most relevant to PCC and the specific PCC functions.Ultimately, we focused on 26 theoretical and empirical articles thatoffer new insights about PCC conceptualization and measurement.Additionally, we reviewed relevant communication, health behavior,and decision science theories and frameworks to assess how theycould aid in developing and structuring the measurement domains.

Qualitative study

We conducted a small qualitative study to examine the experi-ences of patients and family members relative to three PCC functionswith less supporting literature: managing uncertainty, fosteringhealing relationships, and enabling patient self-management. Weconducted the research at Baylor Healthcare System SammonsCancer Center in Dallas, Texas after receiving human subjectsapproval from the Institutional Review Boards at RTI International

for Patient-Centered Communication.

Fostering healing relationshipdmeasurement domains

� Discussion about roles and responsibilities� Honesty, openness, and disclosure� Trust in the clinician’s technical competence, skills, andknowledge

� Expression of caring and commitment

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and Baylor. We observed medical encounters between five oncolo-gists and cancer patients (n¼ 38) receivingoutpatient care. Followingthe observations, we conducted in-depth interviews with thesepatients andanyaccompanying familymembers (present in32 cases)to explore key elements of the PCC functions and specific commu-nication behaviors that facilitate the functions. We incorporated thefindings into the domains (detailed primary data collection findingsare available from the authors: Treiman et al. [2009]).

Expert advisors and scientific symposium

We identified 13 individuals with expertise and extensiveresearch and/or clinical experience related to each PCC functionand worked closely with them to develop and refine the domainstructures for each function (see Appendix A). We selected theexpert advisors on the basis of their expertise in patient-centeredcare and patienteclinician communication, including shared deci-sion-making, and self-management. The expert advisors alsoparticipated in a 1-day scientific symposium in March 2009 toprovide input on the final domain/subdomain structure.

Developing domains

Together the expert input and findings from the literaturereview and qualitative study guided the development of the PCCdomains and subdomains that can serve as a guide for futuremeasure development. For example, in developing the managinguncertainty domains and subdomains we built on typologies ofuncertainty (specifically, typologies for sources and types ofuncertainty) (Kasper, Geiger, Freiberger, & Schmidt, 2008; Politi,Han, & Col, 2007). Findings from the qualitative study supportedand expanded the areas of uncertainty, highlighted clinicianbehaviors that help (or hamper) patients understand and manageuncertainty, and also highlighted critical points of uncertainty inthe cancer care continuum. The experts further expanded andrefined the domains, for example, to differentiate between dis-tressing and nondistressing uncertainty.

The domains and subdomains are organized under the six corefunctions specified in the PCC conceptual framework (Epstein &Street, 2007). We developed the domains and subdomains with anorientation toward patient self-report and in the next phase of thisstudywe plan to develop items for self-report instruments. However,weanticipate that thedomainsand subdomainswill alsoworkwell toguide the development of observational and other measurementmethods.

Results: domains and subdomains for PCC

In this section, we describe the results of the synthesis and theproposed domains and subdomains for each of the six PCC func-tions (see Fig. 2). Functions are defined as the six key componentsof PCC. Several domains then comprise each function, and severalsubdomains comprise each domain.

Domains for the exchanging information function

Exchanging informationdmeasurement domains

� Exploring knowledge, beliefs, and information needs and

preferences

� Sharing information� Providing information resources and helping patientsevaluate and utilize resources

� Facilitating understanding, assimilation, application, andrecall of information

Exploring knowledge, beliefs, and information needs and prefer-ences encompasses identifying the patient’s and physician’sunderstanding of and beliefs about the cancer (e.g., causality,prognosis, and treatment options). Frequently, clinicians have anincomplete understanding of their patients’ information needs and,consequently, may not always provide information that patientsfind useful (Drew & Fawcett, 2002; Feldman-Stewart, Capirci, &Brundage, 2003; Hiramanek & McAvoy, 2005; Lampic & Sjoden,2000; Matthews, Sellergren, Manfredi, & Williams, 2002; Smith,2000). Patients may be unsure of or unable to articulate theirknowledge, beliefs, information needs, values, and preferences;thus, the clinician’s role is often to help patients define thesefactors. Information needs and preferences typically evolve overthe course of care (Butow, Maclean, Dunn, Tattersall, & Boyer, 1997;Squiers, Finney Rutten, Treiman, Bright, & Hesse, 2005). Thus,clinicians’ efforts to solicit and address patients’ information needsand beliefs, with an aim of reaching a shared understanding, areongoing activities in this domain.

Sharing information captures reciprocal information exchange inan effort to create meaning and shared understanding. Ideally,patients share their experience and understanding of their cancer,and clinicians share information consistent with patient preferences.Communication strategies that help patients comprehend, assimi-late, recall, and apply information to their own situation are central toinformation exchange. Clinicians tend to overestimate both theirowninformativeness and their patients’ level of understanding, and theyfrequently do not adequately assess patient understanding(Chaitchik, Kreitler, Shaked, Schwartz, & Rosin, 1992; Farrell et al.,2009; Gattellari, Butow, Tattersall, Dunn, & MacLeod, 1999; Knox,Butow, Devine, & Tattersall, 2002; Scott, Scott, & Auld, 2005;Silberman, Tentler, Ramgopal, & Epstein, 2008). Patients are oftenunsure what types of information would be helpful (Treiman et al.,2009); thus, this domain includes clinicians sharing informationevenwhen patients do not ask, for example, by suggesting resourcesthat patients might find relevant.

Providing informational resources and helping patients evaluateand utilize resources includes discussing and helping patientsevaluate information obtained from other sources (e.g., conflictinginformation or an excess of information). The clinician’s role is tohelp patients identify the kinds of informational resources theydeem useful and to enable patients to identify information sourceson their own that are accurate, easy to use, and meet their needs.

Facilitating understanding, assimilation, application, and recallof information addresses the need for clinicians to help patientsunderstand and remember critical information by repeating keypoints, using everyday language, using support materials, andencouraging the patient to document the conversation.

Domains for the fostering healing relationships function

Discussion about roles and responsibilities encompassesexpectations and preferences about roles and responsibilities in thepatienteclinician relationship (e.g., patient involvement in deci-sion-making). Patienteclinician relationships that provideemotional support and understanding can help patients adjustbetter to their illness (Bakker, Fitch, Gray, Reed, & Bennett, 2001;Fogarty, Curbow, Wingard, McDonnell, & Somerfield, 1999;McWilliam, Brown, & Stewart, 2000). An effective therapeutic

Fig. 2. Patient-centered communication functions and domains.

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Managing uncertaintydmeasurement domains

� Constructing and defining uncertainty� Assessing and understanding uncertainty (cognitive)� Emotion-focused management strategies (affective)� Problem-focused management strategies (behavioral)

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relationship requires that patients, family members (and othercaregivers), and clinician have a mutual understanding of oneanother’s roles and responsibilities. When clinicians and patientsshare preferences for control in the relationship, patients are moresatisfied with their care (Krupat, Bell, Kravitz, Thom, & Azari, 2001;Krupat et al., 2000). In cases where patients’ and clinicians’expectations differ, negotiation and clarification of roles is alsoinvolved. Discussion and negotiation of shared goals is part of thisdomain.

Honesty, openness, and disclosure applies to both patient andclinician communication. For the patient, it refers to sharing infor-mationabouthealthbehaviors, adherence, andother issues that couldaffect cancer care decisions. Although patients want clinicians to behonest, they also want “room for hope” (Treiman et al., 2009); thus,clinicians should clearly present the evidence but acknowledge thatevidence is based at the population level and each patient is unique.Although less is knownabout clinicians’ trust inpatients,mutual trustis essential to have a functional relationship in cancer care.

For the clinician, disclosure refers to honesty about differenttreatment options, side effects, and other issues; it also mandatesnot misleading the patient or withholding important information.This domain includes discussing the patient’s information prefer-ences (e.g., types and amount of information and how and whereinformation is shared), especially for learning difficult news andpresenting information accordingly.

Trust in the clinician’s technical competence, skills, and knowl-edge captures patients’ perceptions about the clinician’s technicalexpertise. Trust, a central element of the patienteclinician rela-tionship, affects many patient behaviors and attitudes (Hall, 2001;Hall, Dugan, Zheng, & Mishra, 2001). Patients’ trust in clinicians isconsistently shown to relate to clinicians’ communication style andinterpersonal skills (Gordon et al., 2006; Hall et al., 2001) and maybe an important element in nonadherence and missed appoint-ments (Beach, Keruly, & Moore, 2006).

Expression of caring and commitment captures patients’ trustthat their clinician puts patient well-being first and is committed totheir best interests and ongoing care (e.g., lack of conflicts, will notabandon them). Another element is clinicians’ willingness to advo-cate for the patient in the healthcare system (e.g., securingappointments). Study participants valued clinicians’ nonverbal (e.g.,hugs, touch) as well as verbal expressions of care and perceivedclinicians as caring when they “went above and beyond” theirprofessional duties to attend to the patient’s well-being (Treimanet al., 2009). Patients also value when communication buildsrapport and connection. They perceive “being known,” acknowl-edged and known as a “whole person,” and “having a humanconnection” as important elements of a therapeutic relationship(Bakker et al., 2001; Merckaert, Libert, & Razavi, 2005; Salander &Henriksson, 2005; Thorne et al., 2005; Treiman et al., 2009).

Domains for the recognizing and responding to emotions function

Recognizing and responding to emotionsdmeasurement domains

� Identifying, exploring, and expressing emotions� Assessing depression, anxiety, and psychological distress� Validation of emotions� Expression of empathy, sympathy, and reassurance� Providing tangible help for dealing with emotions

Identifying, exploring, and expressing emotions involveshelping patients identify and articulate their emotions. The clini-cian acknowledges the emotions (especially when expressed indi-rectly) and clarifies understanding (e.g., “It sounds like you’refeeling scared, is that right?”). In PCC, the clinician explores and

asks questions to understand the patient’s emotions and commu-nicates that understanding to patients.

Assessing depression, anxiety, and psychological distress refers tochecking for depression and other psychological disorders ina systematic manner, whether through general interviewing tech-niques or screening tools. Depression, anxiety, and other psycho-logical disorders canhave significant effects onpatients’ quality of lifeand can negatively affect treatment, including poor adherence(Jacobsen, 2007; Kennard et al., 2004). Clinicians rarely initiateconversations about emotions, and cues of emotional distress areoften ignored or dismissed (Lang, Floyd, & Beine, 2000; Levinson,Gorawara-Bhat, & Lamb, 2000). As a result, diagnosis of psycholog-ical conditions is often missed in oncology practice (Fallowfield,Ratcliffe, Jenkins, & Saul, 2001; Newell, Sanson-Fisher, Girgis, &Bonaventura, 1998). One barrier to identifying depression amongcancer patients is that many of the common symptomsdincludingfatigue, insomnia, and loss of appetitedare also associated withcancer and its treatment.

Validation of emotions refers to clinicians assuring patients thattheir emotions are natural, understandable, and justifiable. Clini-cians are often not adequately aware of patients’ emotional cues,fears, or concerns (Beach, Easter, Good, & Pigeron, 2005; Fallowfieldet al., 2001; Newell et al., 1998; Osse et al., 2002). Some patientsbenefit when clinicians directly address their feelings by validatingthe emotions, showing empathy, and offering tangible help. Othersbenefit when clinicians are more indirect; for example, expressinginterest in the person’s life and everyday activities (Kvale, 2007).

Expression of empathy, sympathy, and reassurance involvesclinicians expressing empathy for the patient’s situation andsympathy for their illness. Clinicians also can help patients dealwith emotions by providing reassurance as realistic and appro-priate. For example, clinicians may be able to provide reassuranceabout pain control or quality of life issues, but not about prognosis.(Reassurance about the clinician’s commitment to the patient isencompassed in the Fostering Healing Relationships function.)

Providing tangible help for dealing with emotions includesproviding or arranging for assistance as needed, which may includeprescribing medication or referring to a support group, counseling,or therapy/training (e.g., stress management, relaxation).

Domains for managing uncertainty function

Previous research has identified three conceptual domains foraddressing uncertaintydcognitive, affective, and behavioral(Camerer & Weber, 1992; Han, Moser, & Klein, 2006; Politi et al.,2007). Cognitive responses include acknowledging, clarifying, andidentifying the sources of uncertainty. Affective responses focus onemotional issues. Behavioral responses address uncertainty moredirectly by identifying information needs and seeking out infor-mational resources.

Constructing and defining uncertainty involves patients andclinicians identifying the existence of uncertainty. Uncertaintyrelated to effectiveness of treatment is prevalent in themanagementof chronic disease and can be a source of anxiety. Short-termuncertainty (e.g., Do I have cancer?) might be alleviated with newinformation, but chronic uncertainty (e.g., Will the cancer comeback?) may require talking about how to cope with it, offering socialsupport, and putting timeboundaries on how long uncertaintymightbe tolerated.

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Patients describe areas of uncertainty, such as prognosis, treat-ment options, side effects, and life changes; clinicians acknowledgethese areas, inquire about unstated uncertainties, and providecontext (i.e., what is known versus what is unknown). Cliniciansmay also introduce beneficial uncertainty into situations wherepatients hold incorrect or fatalistic beliefs (e.g., cancer is alwaysfatal; treatment will have intolerable side effects). Clinicians andpatients then categorize the types of uncertainty. For instance,uncertainty can be reducible (i.e., patient is unsure how to interpretevidence) or irreducible (i.e., conflicting evidence on treatmentoptions). Some uncertainties may be distressing to patients (i.e.,prognosis is uncertain), whereas others may not (i.e., treatmentside effects vary). By categorizing uncertainty, patients and clini-cians can clarify its potential impact and manage it accordingly.

Assessing and understanding uncertainty (cognitive) involvesdetermining the sources of and reasons for uncertainty. Mishel et al.(2005) state that uncertainty occurswhen a personperceives aspectsof the illnessdincluding treatment, prognosis, and recoverydasinconsistent, complex, unknown, or unpredictable. Patients requestclarification on the reasons/sources for uncertainty, and clinicianshelp determine these reasons/sources, such as the unknown likeli-hood of future outcomes, unclear roles/responsibilities, conflictingmedical evidence or provider advice, overly complex information,and varying personal significance of risks (Kasper et al., 2008; Politiet al., 2007). Patients and clinicians also confirm that they havea shared understanding of why uncertainty exists.

Emotion-focused management strategies (affective) involveaddressing the anxiety and distress caused by uncertainty. Forpatients, thismay entail accepting that irreducible uncertainty exists,choosing to address it (or perhaps to deny it), and expressingemotions that accompany it. Clinicians also accept that irreducibleuncertainty exists and assess patient preferences for addressing it.Although theycannot promise to eliminateuncertainty, clinicians canrespond with acknowledgement, reassurance, and an expression ofcommitment to the patient’s care. Cliniciansmay also recommend orrefer patients to emotional coping resources (e.g., counseling,support groups).

Problem-focused management strategies (behavioral) involvetaking direct steps to reduce or tolerate uncertainty. Patientsexpressdand clinicians assessdtheir preferences for dealing withuncertainty, including what information they desire and what rolethey wish clinicians to play. Patients and clinicians formulate a planfor dealing with uncertainty, such as creating decision trees (e.g., ifX happens, then we’ll do Y), contingency plans (e.g., alternativetreatment plan), or timelines (e.g., revisiting prognosis after2 months of treatment). Finally, clinicians and patients mayrecommend or seek additional resources, such as educationalmaterials or clinical evidence, to reduce uncertainty.

Domains for the making decisions function

Making decisionsdmeasurement domains

� Communicating about decisional needs, support, and process� Preparing for and deliberating about the choices� Making and implementing a choices and action plan� Assessing decision quality and reflecting on the choice

Enabling patient self-managementdmeasurement domains

� Learning and assessing� Sharing and advising� Prioritizing and planning� Preparing, implementing, and assisting� Arranging and following up� Choice

This function’s domains are based on two underlying frame-works. The Conceptual Framework for Shared Treatment Decision-making (Charles, Fagnis, & Whelan, 1999) identifies three decision-making approachesdpaternalistic, shared, and informeddandstates that the approach (i.e., paternalistic, shared, informed)evolves over the course of the encounter. The Ottawa DecisionSupport Framework to Address Decisional Conflict (O’Connor,

2006) asserts that participants’ decisional needs affect decisionalquality, which in turn affects behaviors, health outcomes, emotions(e.g., regret, blame), and use of health services.

Communicating about decisional needs, support, and processbegins with communication between the patient and the clinicianaboutwhat each expects from the decision-making process and theirpreferred role in it. Each party seeks and shares information tosupport the decision process, endorses the other’s participation, andoffers or creates opportunities for involvement (Fiscella, Franks,Srinivasan, Kravitz, & Epstein, 2007; Zandbelt, Smets, Oort,Godfried, & de Haes, 2007). Because this transactional model maybe unfamiliar, patients and clinicians focus on active listening andpartnership building (Siminoff, Rose, Zhang, & Zyzanski, 2006).Clinicians should also consider the patient’s culture because somecultures may influence the amount of information shared with thepatient, who the decision-maker is, andwhat options are and are notpossible (e.g., for religious reasons).

Preparing for and deliberating about the choices begins withrecognizing that a decision needs to be made (Mullen et al., 2006).This is critical with preference-sensitive decisionsdwhere there isno right or wrong choicedthat should be based on patient pref-erences and values. In the context of cancer care, patientsfrequently face a series of choices as opposed to a single decision.

Clinicians letpatients knowwhenchoices exist and layoutoptions,including not making a decision (unless there is a clinically imminentconcern). Preferences for level of involvement in decision-makingvary across patients, and their ability to participate may diminish astheir illness progresses (Epstein & Peters, 2009). Patient preferencesalso may not be stable (Slovic, 1995) and can change as new infor-mation becomes available and as patients gain experience with theirillness (Mallinger et al., 2006). Deliberation includes clarifying andexpressing opinions, values, and preferences related to the optionsand sharing which option each party is leaning toward and why.When clinically appropriate, clinicians recommend options, followedby discussion about the patient’s reaction to the recommendation.

Making and implementing a choice and action plan involvesagreeing to a choice and then exploring and discussing the implica-tions (e.g., treatment process and next steps). Often, patientsmay notrealize that they have made a decision (e.g., “I did what the doctorrecommended. He decided, not me.”) (Treiman et al., 2009). Finally,patients choose the extent to which they implement the action plan.

Assessing decision quality and reflecting on the choice involvesrevisiting the decision, which can contribute to higher quality deci-sions (Epstein & Street, 2007). Under this domain, patients andclinicians share experiences implementing the plan, discussoutcomes, express satisfaction (or discontent) with the experience,and identify how to revise or build on the prior choice. The focus is onassessing the quality of the interaction and the quality of the decision,although it may be difficult to separate the decision process from thehealth outcome.

Domains for the enabling patient self-management function

Two frameworks informed the development of this function’sdomains. First, the “5As”model of behavior change (Assess, Advise,Agree, Assist, Arrange) outlines evidence-based clinician behaviors

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that can be applied to cancer care with limited modification(Glasgow, Emont, & Miller, 2006). Second, self-determinationtheory postulates that maintaining behaviors over time requiresthat patients internalize values and skills for change and that theyexperience self-determination (Ryan & Deci, 2000).

Self-management communication can focus on a number ofissues, including navigating and accessing resources (Epstein &Street, 2007). Cancer patients describe navigation assistance asfundamental to obtaining care (Treiman et al., 2009). Wells et al.(2008) identify the common elements of patient navigation, suchas reducing barriers, promoting access to timely and continuouscare, focusing on a defined care episode and a targeted set ofservices, and focusing on a single health condition (as opposed tobroader case management).

Learning and assessing focuses on understanding where patientsstand in their interest in and ability to self-management. Bothpatients and clinicians need to share their perspectives on illness andthe self-care role. Clinicians should assess the patient’s level ofmotivationandactivationand tailor their guidance accordingly, beingmindful of psychosocial issues that may impede self-management.

Sharing and advising resembles the elements of the ExchangingInformation function in which the patient expresses his or herneeds and priorities (e.g., “My job involves physical activity, but Ineed to eat healthier.”). The clinician provides guidance to supportpatient autonomy and sustain internal motivation.

Prioritizing and planning involves tracking and monitoringa patient’s condition and supporting the patient in this surveillanceprocess. The patient and clinician collaboratively discuss anddecide on goals, plans, and priorities for self-management.Discussion may focus on the patient’s support system (or lackthereof) in implementing a treatment or survivorship plan (e.g., “Idon’t have anyone to drive me to my appointments.”).

Preparing, implementing, and assisting involves learning aboutand practicing self-care skills (e.g., symptom management, dealingwith stress) that are critical components of managing most chronicillnesses. However, patients also need to learn problem-solvingskills and report successes and failures in implementing the self-management plan. Availability and quality of social support can becritical factors affecting implementation.

Arranging and following up involves the clinician or anothermember of the care teamcommunicating the patient’s needs to otherteam members, such as explaining the treatment and survivorshipplansorarranging foradditional resources.Patients shouldrelaywhatis effective and what needs correction so that clinicians can advisethemandmake changes. This is particularly importantwhenmuchofthe care takesplaceoutside clinical settings (e.g., takingmedicationathome, adjusting lifestyles). Clinician-patient communication canenable self-management by supporting patient autonomy, providingaccess to self-help resources, offering advice, engaging social supportnetworks, and helping navigate complex care systems.

In addition to developing domains specific to the six PCC func-tions, we developed several domains that cut across functions. Thesecross-cutting domains encompass (1) communication related to thetime and setting for the interaction, such as spending enough timeand privacy; (2) communication about the roles and responsibilitiesof the cancer care team, such as discussion of who is in charge andhow team members communicate and coordinate; and (3) partner-ship-building communication behaviors that include showing cour-tesy and respect and skills such as attentive listening and notinterrupting.

Discussion

The domain structure described above represents a promisingplatform for operationalizing the complex PCC construct and for

taking the next step of item development and testing. Building onthe overall conceptual framework for PCC in cancer care (Epstein &Street, 2007), we identified domains of all six PCC functions thatcan be used to categorize specific survey items and/or observationalcoding measures. This is an advantage over existing PCC measuresthat generally include only perceptual or behavioral indicators andthose that are not theoretically based. Although we focused specif-ically on cancer care, this work should generalize to many otherclinical contexts, given that patient-centered care should be the goalof medicine across all health conditions. However, we recognize thatcancer care may often be more emotionally charged than otherclinical encounters, and the measurement domains reflect this fact.

The review of the literature, analysis of patient interview data,and input by experts provide further support that the six functionsare meaningful elements of the broader PCC construct. To a largeextent, these sources reinforced each other, thus providing greatersupport for the identified measurement domains and subdomainsthan if we relied on any single source. The experts and qualitativestudy frequently provided greater depth and insights that wewould not have gleaned from the literature alone.

The functions are complex, involve multiple components, andoverlap with one another. We considered whether to createa hierarchy of PCC functions; that is, identifying functions that areof greater importance or should be givenmore attention in the nextphase of development. The Managing Uncertainty function isa candidate, given its perceived clinical importance, as is theRecognizing and Responding to Emotions function because ofthe limited literature in this area. We recognize, however, that therelative importance of the functions likely fluctuates as a patientmoves along the cancer continuum, which suggests that an overallhierarchy might be inappropriate. There was no consensus amongthe experts at the symposium about this issue.

We also considered whether any PCC functions should be elimi-nated, combined, or modified. For example, we explored separatingpatient navigation from the self- management function, given thedistinct role of navigators in helping patients move through thehealthcare system and obtain needed services (National CancerInstitute, 2005). We decided to retain patient navigation asa component of self-management because of the similar objectives(e.g., building self-efficacy and patient skills). Although the inter-connectedness of the functions contributes to their internal consis-tency, it could eventually create difficulty categorizing self-reporteditems into specific functions. However, advanced statistical andanalytic techniques from traditional and modern measurementtheory are available to address such difficulties.

Implications for clinical practice

Articulating the domains led us to draw the following conclu-sions, which have implications for clinical practice. First, thedomains illustrate the importance of a collaborative and interactiverelationship between patients and clinicians. This ties into the needto establish and discuss roles and responsibilities for each party,including the patient, family member, clinician, and other careteam members. Second, the domains highlight the importance ofpsychosocial and emotional aspects of PCC and the need for supportsystems that facilitate its provision. This is linked closely to theneed for trusting and culturally sensitive partnership among allmembers of the healthcare team and is consistent with literaturesupportingemindful communicationethat considers empathy andactive listening (Krasner et al., 2009). Third, the domains reiteratea focus on problem solving and managing the day-to-day aspects ofillness and well-being. This speaks to the need for patientengagement and involvement in decision-making and self-careoutside of clinical interactions.

L.A. McCormack et al. / Social Science & Medicine 72 (2011) 1085e1095 1093

Limitations

The functions and domains (in Fig. 2) are not without limita-tions. The domains are a necessary step in operationalizing thepatient-centered communication construct, but are limitedbecause they are based on the same literature we have critiqued ashaving gaps. Most of the existing literature includes cross-sectionalstudies that do not establish causal links between measures andoutcomes. In addition, for certain functions (e.g., managing uncer-tainty), the literature is sparse. The domains could be enhanced orrefined by additional formative research with patients, given thatwe conducted patient interviews focusing on only three of the sixfunctional areas. Like the functions, the domains are not necessarilyhierarchical, rather they overlap and interact.

Considerations when measuring PCC in cancer care

Since completing this first phase of the project, the project teamhas collected a large pool of patient self-reported survey items,identified the leading items and developed new items as needed,then cognitively tested the items with cancer patients. The next stepis to pilot test the survey items in a variety of clinical settings. Wedecided to start with patient self-reported survey items, but thedomains could also be used to develop clinician survey items andobservational measures, since the domains focus on the character-istics of the clinical interaction. Having related sets of measures(for patient self-report, clinician self-report, and observational) thatall take a functional approach to assessing PCC is an ideal goal thatwould overcome the limitations presented earlier in this paper.Psychometric analysis will be critical for evaluating the newmeasures at the individual item level, the extent towhich they reflectthe overall PCC construct, and eventually, their relationship withhealth outcomes. As these steps are undertaken, several practicalconsiderations and measurement issue should be kept in mind.

1. Overlap across the items2. Team-based clinical care3. Longitudinal versus encounter-specific assessments4. Halo effect and social desirability5. Communication needs and preferences change over the

continuum of care

1. Overlap across the items. Some functions clearly overlap, somemore than others. Future empirical work can address this limita-tion. The focus of this paper was to take the initial steps in measuredevelopment, recognizing that more work is needed.

2. Team-based care. Cancer care is frequently delivered bymultiple clinicians and other professionals, sometimes in multiplesettings, who are each responsible for a certain aspect of the careprocess. The clinicians sometimes work together as a team toprovide care, and in other cases, the care is not well coordinated. Inboth situations, patients may or may not regard the group ofclinicians as “a team.”Measuring communication across the cancercare team is challenging because patients’ experiences may vary byteam member and over time. Thus, we need to decide whether tomeasure communication between the patient and one clinicianversus the patient and the healthcare team.

3. Longitudinal versus encounter-specific assessment. MeasuringPCC is further complicated by the number of clinical episodes andsettings in which cancer patients receive care (e.g., Radiation center,surgical center, infusion center, physicians’ offices, hospital).Assessing a single encounter versus the patient’s entire cancer careexperience results in a trade-off between timeliness and compre-hensiveness. A time lag after the cancer care experience may alsodiminish a patient’s’ ability to report his or her experience accurately.

4.Halo effect and social desirability. If patients genuinely like theirclinicians, theymay rate the communication positively regardless ofits quality. High ratings on self-reported instruments can also occurbecause of halo or social desirability bias. Instrument developerscan use survey research procedures tomitigate these biases, such asframing items in a neutral way and using appropriate introductorytext, and can control for social desirability using appropriate indi-cators. Focusing more on the communication process (i.e., askingthe patient what happened versus their evaluation of whathappened) may also ameliorate this issue.

5.Communication needs and preferences change over the continuumof care. The relative balance and importance of different communi-cation functions change over the trajectory of the patient’s illness. Forexample, early in the cancer care continuum there may be greaterneed to share information and focus on the patient’s emotions abouthis/her diagnosis; later in the continuum dealing with uncertainty(e.g., about treatment effectiveness) may be more important. Inmeasuring PCC, it will be important to determine the patient’s phasein the cancer care continuum and interpret findings accordingly. Inaddition, some measures may be tailored to specific phases of care.

Conclusion

The goal of this paper was to lay the initial groundwork for futuremeasurement. It wasmeant to be a stepping stone to help the readergain a comprehensive understanding of what PCC involves froma theoretical perspective and what needs to be measured. The PCCframework, and by extension the domains, are derived fromempirical data about what happens in communication interactions,but they also reflect what we view as best practices. We developedthe domains to reflect a normative (creating a new standard) ratherthan descriptive (what is happening) approach. Thus, the domainsthus represent a “gold standard” for patient-centered communica-tion and set expectations for the next step in development.Measuring PCC in this way can drive quality improvement (NationalQuality Forum, 2010).

Once fully developed, PCC measures could be used for at leastthree purposes: quality assessment, surveillance, and interventionstudies. With patient-centered care being a key component ofquality healthcare, the PCC measures could be used for assessing thequality of communication at various levels, ranging from an indi-vidual encounter to an entire healthcare system. Using the measureson a national survey, for example, would enable a more compre-hensive surveillance approach to monitoring PCC and examiningtrends over time. Measurement is a first necessary step to qualityimprovement. With a valid and reliable PCC measure, interventionstudies could be undertaken to explore ways to improve patient-eclinician communication within healthcare delivery systems.

Appendix A

Exchanging Information Ron Epstein, MD, MPH, Director ofResearch in Family Medicine, University of Rochester, Rochester, NY.Paul Haidet, MD, MPH, Assistant Professor of Medicine at BaylorCollege of Medicine. Fostering Healing Relationships Anthony Back,MD, Fred Hutchinson Cancer Research Center Clinical ResearchDivision, Affiliate Member, University of Washington MedicineOncology Division, Professor (communication between doctors andpatients, palliate care, integrative medicine).Mary Catherine Beach,MD, MPH, Associate Professor, Department of Health, Behavior andSociety, BloombergSchool of PublicHealth, JohnsHopkinsUniversity.Managing Uncertainty Ron Epstein, MD, MPH, Director of Researchin FamilyMedicine, University of Rochester, Rochester, NY. Paul Han,MD, MA, MPH, Center for Outcomes Research and Evaluation, MaineMedical Center. Recognizing and Responding to Emotions Paul

L.A. McCormack et al. / Social Science & Medicine 72 (2011) 1085e10951094

Jacobsen, PhD, program leader for Health Outcomes & Behavior,Division Chief for Psychosocial and Palliative Care, and ScientificDirector for the SurveyMethods Core Facility atMoffitt Cancer Centerin Tampa, FL. Tim Quill, MD, Professor of Medicine, Psychiatry, &Medical Humanities andDirector of the Palliative Care Programat theUniversity of Rochester Medical Center. Making Decisions HilaryLlewellyn-Thomas, PhD, Dartmouth Medical School, Department ofCommunity and Family Medicine, Director, Health DecisionsResearch Program. Karen Sepucha, PhD, Senior Scientist with theHealthDecision ResearchUnit atMassachusetts GeneralHospital andinstructor in Medicine at Harvard Medical School. Enabling Self-Management (Enabling Self-Management and Patient Navigationfunctions were one function.) Russ Glasgow, PhD, Kaiser PermanentInstitute for Health Research. Judy Hibbard, DrPH, University ofOregon Professor of Health Policy at the University of Oregon. PatientNavigation Electra Paskett, PhD, the Ohio State UniversityComprehensive Cancer Center. Kevin Fiscella, MD, MPH, AssociateProfessor of Family Medicine and Community & PreventiveMedicinewith tenure, University of Rochester School of Medicine & Dentistry.

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