doi: 10.1111/hex.12186

Patient participation in clinical encounters: a systematic review to identify self-report measures Brian Mavis PhD,* Margaret Holmes Rovner PhD,† Sarah Jorgenson MA,‡ John Coffey MLS,§ Nandita Anand BS,¶ Emi Bulica BS,¶ Carolyn Marie Gaulden MSW,¶ Jacob Peacock BS¶ and Alycia Ernst BS¶ *Associate Professor and Director, Office of Medical Education Research and Development, College of Human Medicine, Michigan State University, East Lansing, MI, USA, †Professor, Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, Michigan State University, East Lansing, MI, ‡Communications and Research Associate, Center for Advancing Health, Washington DC, USA, §Librarian II, Michigan State University Libraries, East Lansing, MI, ¶Medical Student, College of Human Medicine, Michigan State University, East Lansing, MI, USA

Abstract Correspondence Brian Mavis, PhD Associate Professor and Director Office of Medical Education Research and Development College of Human Medicine Michigan State University 965 Fee Road, Room A202 East Lansing, MI, 48824 USA E-mail: [email protected] Accepted for publication 3 February 2014 Keywords: patient involvement, patient participation, questionnaire, review

Background There is evidence suggesting that active participation of patients in their health care can improve the quality of care and decrease health-care costs. Further, patient reports of their healthcare experience are increasingly used to monitor health-care quality. Objective This paper describes a systematic review of peerreviewed studies to identify measures of patients’ active participation in their encounters with health-care providers. Methods A systematic literature review was conducted for publications indexed from 1975 to 2011. Of interest were self-reported measures of patient participation that were not limited to a specific health concern. All abstracts were reviewed independently by two authors, and the full paper was considered for those meeting inclusion criteria. Main Results From a review of 4528 citations, ten measures were identified. The approaches to development of the measures varied considerably, as did their study samples and their psychometric quality. Discussion These measures represented three conceptual frameworks: empowerment and self-efficacy, therapeutic alliance, and consumerism/satisfaction. They provide a more comprehensive perspective of patients’ experiences of their provider encounters, and a better understanding patient behaviour enhanced the quality of health-care delivery or improved health outcomes. These measures underscore the continuing challenge of defining patient participation and the multiple theoretical approaches that underlie this form of patient behaviour. Conclusions Current interest in quality-related physician report cards gives significant weight to patients’ self-reported experiences as one dimension of physician performance. It is critical to identify the specific focus and quality of measures selected for this and research purposes.

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Patient participation in clinical encounters, B Mavis et al.

Introduction Advances in knowledge about the determinants of disease and the tools available to improve its prevention, management and cure have increased exponentially in the past two decades, promising improvements in the length and quality of life for many people. However, obtaining the benefit of these advances depends increasingly on the knowledge, skills and motivation of individuals, regardless of whether they are well or sick. Knowledge, skills and the confidence to use them to manage one’s own health care are the key components of patient activation.1 The benefits of patients’ participating in their medical encounters are numerous. At the individual level, patient participation is believed to have the potential to increase patient and provider satisfaction,2 to improve doctor–patient communication, enhance management of chronic illnesses,3,4 and improve patient health outcomes.5 At the health system level, patient participation in their care has been suggested as a strategy to enhance accountability within the health-care system, with the potential to reduce health-care costs,6,7 medical errors8 and malpractice suits.9,10 Defining patient participation In 1978, the World Health Organization consensus statement on primary health care advocated for patients’ rights and responsibility to participate in their health care.11 While there was widespread agreement with the spirit of this declaration, there was less consensus on the meaning of patient participation, with patients and providers having different ideas about what it means for patients to participate in their health care.12 This lack of clarity has resulted in misconceptions, confusion and conflict in provider–patient encounters.13 Patients often perceive their participation in health care as a right that they can choose to exercise by adopting an attitude to actively engage in their care.14 In contrast, many providers see themselves as the catalyst for patient participation in health care;

it is an opportunity that a provider can offer, should the provider value the patient’s participation and decide to work to activate it.15 Broad definitions exist as to what constitutes patient participation.15 Patient participation in clinical encounters has been described using terms such as activation, alliance, collaboration, engagement, empowerment, involvement, satisfaction and sharing. The multiplicity of terms illustrates how prevalent the concept has become within discussions of health-care delivery. At the same time, this breadth of terminology underscores the tangled complexity of the concept and the difficulty of developing a common language. In practice, these terms for participation are highly inter-related conceptually and analytically. For example, therapeutic alliance has been found to enhance patient empowerment, creating opportunity for shared decision making among various treatment options and ultimately increasing patient satisfaction.16,17 That is, a strong patient–provider relationship allows patients to engage as active participants in their health care, often improving treatment outcomes and resulting in greater satisfaction. The various conceptual approaches that have been used to study patient participation suffer from imprecise and overlapping definitions. This lack of a common language or shared understanding hinders attempts to develop coherent programmes to enhance patient participation and to study the impact of participation on health-care outcomes.12 In an effort to refine the concept of patient participation and clarify its relationship to other related concepts, Sahlsten et al.12 identified four primary attributes related to patient participation: 1. An established patient–provider relationship, 2. Reallocation of power and control between patient and provider, 3. Meaningful information sharing between patient and provider and 4. Active engagement of patient and provider in health-care delivery. These four attributes provide a useful framework for considering the various conceptual models underlying research related to patient

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Patient participation in clinical encounters, B Mavis et al.

participation. The strength and quality of the relationship between the patient and provider is central to therapeutic alliance,13,17 while studies focusing on the reallocation of power within the patient–provider relationship often are derived from an empowerment model.18 When considering the third dimension, meaningful information sharing between patient and provider, research related to both patient preferences19 and shared decision making20,21 are relevant. These areas of discourse are largely derived from perspectives embedded within the health-care system. Aujoulat et al.18 describe how the social action and self-help movements contributed to growing patient consumerism, which has focused attention on issues related to both patient empowerment18,22 and patient satisfaction.23,24 Patient participation is a common point of intersection for measures developed across all of these models. Conversely—perhaps with the exception of shared decision making—these measures need not necessarily include patient participation at all as part of their content. Taken together, these studies illustrate the need for authors to clearly and carefully specify the attributes—as identified by Sahlsten et al.12—or theoretical model upon which their definition of participation is predicated. Another important specification is the access point or points within the health-care delivery system where the participation of patients is under investigation. Such studies might include a variety of other features, such as the participation of family members, changes in participation over time or related to the course of a chronic disease. The purpose of this systematic review is to describe measures of patient participation. Given the complexities of defining patient participation as described above, we have limited this review along several dimensions. This review focuses on the patient–physician encounter, as a point in the health-care system where the opportunity for participation is likely, and where patient participation can have an important impact on health-care delivery as well as patient outcomes. For this review, patient participation was considered in terms of an active

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patient role in a clinical encounter. We were interested in self-report measures completed by the patient, rather than observational approaches or measures designed to be completed by family members or health-care providers. Of interest were measures of participation that were not focused on a specific health concern or chronic disease. This strategy would allow us to identify measures that could be used in a variety of settings. Finally, also of interest were measures that were readily available for use by investigators, that is, measures published within the research literature.

Methods Search strategy A systematic literature review from selected databases was conducted to identify measures of patient participation in clinical encounters. The literature search included publications from 1975 to 2011 that were indexed in Health and Psychosocial Instruments (HAPI), Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed and PsychINFO. All databases were searched using controlled vocabulary terms (e.g. MeSH in MEDLINE) when available, as well as a variety of keywords related to ‘patient participation’. These were combined with a set of terms including ‘instruments’, ‘surveys’, ‘questionnaires’, ‘data collection’, ‘measurement’ and other research methods terminology. This strategy yielded a total of 4528 citations for preliminary review. Search strategies are provided in Appendix 1. Inclusion criteria The main inclusion criteria for this review required the publication to include the specific questions used to measure participation. In addition, the measure needed to be a patient self-report of their own behaviour and attitudes in the patient–physician encounter, the questions worded such that they were non-disease specific and published or otherwise publically available. Non-disease-specific measures were

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identified as including questions that were worded so that they were transferrable across different conditions and still able to retain their functionality. For example, the Effective Consumer Scale25 was developed for patients with arthritis; however, the wording of the items does not specifically mention arthritis making them adaptable to other settings. Although many opportunities exist for patient participation in their health and health care, this review was limited to measures developed to evaluate patients’ participation in clinical encounters with a medical provider. Medical providers included doctors, nurses, mental health professionals and other trained professionals delivering services in a health-care setting. Only papers that focused on development and psychometric qualities of the measure were included in the review. Exclusion criteria Measures of participation were excluded from the review if they were proprietary or there was a usage fee associated with obtaining them; no measure was available in the article; the measure was designed to be completed by someone other than the patient; the measure was observational; the question wording referenced a specific health concern; the paper described application of the measure but not its development; or the type of patient participation was outside of provider–patient encounters. In addition, only English-language publications were included in the review. Review process A two-phase review process was used. In the first phase, 4528 citations identified for review were divided among pairs of reviewers for independent review on the basis of the inclusion and exclusion criteria. During this phase, paired reviewers would discuss any discrepancies related to the inclusion or exclusion criteria, and any unresolved discrepancies between reviewer pairs were presented to the whole review group for resolution. A total of 48 articles resulted from this initial review.

A secondary review was conducted by three of the authors (MHR, BM, SJ). This review included the 48 articles with measures identified in the first round, as well as 45 additional articles around which uncertainty remained or that were gleaned from the reference lists of papers identified for possible inclusion. The purpose of the secondary review was to more closely examine the wording of the questionnaire items to distinguish participation measures from measures of satisfaction, shared decision making, patient preference and therapeutic alliance. Selfreported participation in an encounter with a physician or other provider could be appropriately included in measures of satisfaction, patient preferences or therapeutic alliance, but self-reported patient participation is not a necessary element of any of these measures. Figure 1 provides an overview of the review process presented as a PRISMA flow diagram.26 The wording of the questions for measuring patient participation was central in the process of distinguishing among these closely related constructs. Patient participation questions focused on actions of the patient in a clinical encounter (e.g. I ask my doctor to explain test results to me that I don’t understand). In contrast, patient preference questions represented attitude rather than action (e.g. I would like my doctor to spend more time explaining test results to me). Measures of therapeutic alliance focused primarily on patients’ perceptions of their relationship with their health-care provider (e.g. I have a good relationship with my health-care provider). Satisfaction measures often take a consumerism approach, which although possibly grounded in therapeutic alliance, represent a summary judgment of satisfaction with the provider based on any number of possible criteria and that might or might not include patient–provider interactions (e.g. I would recommend this doctor to my friends and family). As it is most commonly used as an outcome measure, satisfaction measures were excluded in the second phase. Shared decision making could be considered a subset of patient participation, in that shared decisions engage the patient in the delivery process as a means of acknowledging preferences,

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Patient participation in clinical encounters, B Mavis et al.

Identification

resources and other psychosocial factors. However desirable, shared decision making represents only a portion of actions that characterize a patient actively taking part in his or her health care. Patient participation in chronic disease self-management may involve changing behaviour to be more active in performing chronic disease self-management.27 This would result in better adherence, but would not necessarily include weighing pros and cons in interventions with the intent of accepting or rejecting based on patient preferences.28 Questionnaires that identified shared decision making as the main

focus were classified as such rather than participation and were not included in this review.21 Many of the measures considered in this review contained questions that addressed one or more of the related domains. If there was adequate evidence presented to suggest that a useful index of participation could be derived, the measure was included in the review.

Results Ten measures were identified as potentially useful in studies of patient participation in clinical

Records identified through database searching ( n = 4528 )

Additional records identified through other sources ( n = 45 )

Eligibility

Screening

Records after duplicates removed ( n = 4555 )

Records screened ( n = 4555 )

Records excluded ( n = 4220 )

Full-text articles assessed for eligibility ( n = 335 )

Full-text articles meeting exclusion criteria ( n = 242 )

Included

Studies included in qualitative analysis ( n = 93 )

Studies included in final review ( n = 10 )

Figure 1 PRIMSA Format Flow Diagram of Article Review Process.

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encounters. In some cases, a number of items were aggregated to create a scaled subscore within the measure related to participation in patient–provider encounters. In contrast, there were some measures where participation items were scattered across other investigator-defined subscales. The ten measures identified in this review represent three main conceptual lineages: empowerment and self-efficacy, interaction and therapeutic alliance, and consumerism. The approaches to development of the measures varied considerably, as did the samples upon which the measures were based. Reliability information was provided by most of the authors. Evidence for the validity of the measures varied across the studies reviewed, but all of the studies provided some information about validity. The measures included in this review are summarized in Table 1. Patient perceptions of involvement during hospitalization This measure, developed for hospitalized patients recovering from myocardial infarction (MI), assesses their participation in their care.29 It is based on an interactional model where participation is a patient–provider interaction. The authors used literature review and expert opinion as a means of developing questionnaire items, as well as focus groups with patients to delineate patients’ understanding of and experiences with participation in their care. The questionnaire is made up of six subscales representing various dimensions of hospital care. With respect to the goals of this review, three of the subscales contain items related to participation with health-care professionals: patient involvement, patient needs and treatment planning. Although the context of this scale was hospitalized MI patients, the question wording makes the items applicable to a variety of health issues or treatment settings. The validity of the questionnaire is presented in terms of content validity, construct validity and predictive validity, based on a sample of 652 hospitalized cardiac MI patients.

Health-care empowerment questionnaire The development of this scale was based on an empowerment model,30 with empowerment defined as a ‘mechanism that leads individuals, groups, organizations and communities to increase their control over problems they face (p. 430)’. The questionnaire items were developed from a review of the published literature and subsequent review by health-care experts. Participants rated each item using two scales: perceived control and importance of control. The measures were validated by exploratory and confirmatory factor analyses on independent samples of older adults at risk for loss of autonomy. The factor structure was consistent with the original focus on patient empowerment, and three principal factors were identified: patient participation in decisions, patient– provider interactions and patient control of health-care services. The wording of the items makes this measure appropriate for use in many types of clinical encounters. Perceived effectiveness and likelihood of taking action This measure was developed to provide insight into patients’ willingness to participate in efforts to enhance health-care safety, with a focus on self-efficacy within the context of the health belief model. A sample of university employees were presented with a list of behaviours derived from federal recommendations on the reduction of medical errors. The respondents rated these recommendations on perceived effectiveness and likelihood of personal adoption. The preventive actions were grouped into three categories: longstanding recommendations, newer recommendations and those requiring patients to question their providers. Seven of the 14 recommendations that make up the questionnaire involve patient participation with physicians or other health-care providers. A path model described the positive relationship of perceived effectiveness and self-efficacy in predicting the likelihood of engaging in behaviours that reduce the risk of medical errors.8

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Patient participation in clinical encounters, B Mavis et al. Table 1 Measures of Patient Participation in Clinical Encounters and Sample Items Measure name (source) 1. Patient perceptions of involvement during hospitalization (Arnetz et al.29)

Sample

Validity

N = 652 hospitalized cardiac MI patients

Literature review, patients focus groups and expert judgment used for scale development Association of patient satisfaction with involvement but not pain and anxiety associated with illness experience Discriminates among cardiology departments, male/female patients, and younger/older patients

2. Health Care Empowerment Questionnaire: HCEQ (Gagnon et al.30)

N = 873 persons 75 or older at risk for loss of autonomy through functional decline in ADL

Literature review and health-care experts used for scale development

Confirmatory factor analysis demonstrating convergent and discriminant validity

3. Perceived Effectiveness and Likelihood of

N = 195 university staff members

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Literature review used for scale development

Subscales (no. of items) and sample items

Reliability

Patient Involvement (6) The patient asks questions. The patient is involved in discussions about his/her care and treatment. The patient expresses his/ her views. Patient Needs (7) Did you receive the information you wanted about your medications? Did you have an opportunity to ask questions about your condition?

a = 0.82

Treatment Planning (4) Did you take part in discussing your treatments? Did you discuss the goals of your treatment with your doctor? Did you take part in planning your follow-up care? Involvement in Decisions (3) Did you feel that you: Asked for explanations? Asked questions? Asked for advice?

a = 0.75

Degree of Control (3) Do you feel that you and your loved ones decide: The need for services? The type of health-care services received? The amount of health-care services? Involvement in Interactions (4) Do you feel that: Your choices are respected? You obtain all the information you want? You get the help you need? All scale items combined (10) Longstanding Recommended Actions (8) Do you make sure that all of your doctors know about:

a = 0.82

a = 0.79

a = 0.89

a = 0.79

a = 0.83 Test–retest = 0.70 Not reported

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Patient participation in clinical encounters, B Mavis et al. Table 1 Continued Measure name (source)

Sample

Validity

Taking Preventive Action (Hibbard et al.8)

Path analysis of selfefficacy and perceived effectiveness of taking action to predict likelihood of taking action

4. Kim Alliance Scale (Kim, Boren & Solem16)

5. Krantz Health Opinion Survey (Krantz, Baum & Wideman31)

N = 68 registered nurses reporting on their experiences as patients

Multiple samples of university undergraduates

Literature review and expert opinion used for scale development Associated with alliance relationship measure but not with health locus of control measure

Low correlations with measures of health locus of control, repressionsensitization, hypochondriasis and social desirability.

Subscales (no. of items) and sample items Every prescription medication you are taking? All of the over-the-counter medicines and supplements you are taking? Allergies or adverse reactions you have to medications? Actions Requiring Questioning of Medical Authority (4) Do you have the surgeon mark where the surgery will be? Do you ask health-care workers who come in contact with you if they have washed their hands? Do you confirm whether you are getting the right medication and dose? Collaboration (8) I make suggestions of what works best for me I participate in establishing goals Empowerment (6) My provider encourages me to make decisions I have an active partnership with my provider

Integration (5) I feel involved in my health care My provider supports my point of view All scale items combined (30) Information Seeking (7) I usually don’t ask my provider many questions about what they are doing during a medical exam I’d rather be given choices than have the doctor make decisions for me I usually wait for my provider to tell me the results of a medical exam than asking them immediately

Reliability

Not reported

a = 0.80

a = 0.71

a = 0.80

a = 0.91 KR20 = 0.76 Test–retest = 0.59

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Patient participation in clinical encounters, B Mavis et al. Table 1 Continued Measure name (source)

Sample

Validity

N = 56 freshmen dormitory residents

Differentiated clinic users from general sample; differentiated high self-care students from general sample Negative association with number of clinic visits; positive association with number of questions asked during medical visit, involvement in medication choice and patient satisfaction Literature review and opinions from patients, physicians and experts

N = 12 students enrolled in medical self-help course and N = 81 students seeking health care

6. Effective Consumer Scale: EC-17 (Kristjansson et al.25; Santesso et al.32)

N = 335 sampled from interested consumer organization membership lists

N = 66 Norwegian in-patients taking part in selfmanagement programme (Hamnes et al., 2010)

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Validity information from a Norwegian version of the scale: construct validity shown by hypothesized low to moderate correlations with measures of coping and general health.

Subscales (no. of items) and sample items

Effective Consumer Scale (48) I have built an open and trusting relationship with my health-care provider I can be assertive to get what I need to meet my health needs I know who to work with to meet my health needs Effective Consumer Scale (17) I can express my concerns well to health-care providers I know how to ask good questions about my health and my disease I am able to play the role I want in my health-care team

Reliability

a = 0.96

Not Provided

a = 0.95 Test–retest = 0.90

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10 Patient participation in clinical encounters, B Mavis et al. Table 1 Continued Measure name (source) 7. Perceived Involvement in Care Scale: PICS (Lerman et al.34)

Sample

Validity

N = 131 primary care patients

Association with self-reported understanding of illness, reassurance, perceived control and expected improvement. Not associated with self-rated discomfort. Doctor Facilitation subscale associated with patient satisfaction

N = 81 primary care patients N = 60 primary care patients

8. Communication with Physician Scale (Lorig et al.27)

9. Consumer Health Information Preferences Scale

N = 83 primary care patients N = 1130 adults participating in self-management courses

N = 2636 adults from U.S. national sample N = 4035 adults from U.S.

Subscales (no. of items) and sample items Patient Decision Making (4) I suggested a certain kind of medical treatment to my doctor I expressed my doubts about the tests or treatments my doctor recommended I insisted on a particular kind of test

Patient Information (4) I asked my doctor to explain the treatment or procedure to me in greater detail I went into great detail about my symptoms I asked my doctor a lot of questions about my symptoms All scale items together (13) Multitrait scaling analyses were used to determine convergent and discriminant validity. Construct validity determined by comparing correlations among the multiple measures to expected hypothesized relationships Segmentation of sample 2 respondents on two dimensions: active/passive and high/low

Reliability

How often do you: Prepare a list of questions for your doctor? Ask questions about the things you want to know and things you don’t understand? Discuss any personal problems that may be related to your illness?

Relationship with Health Care Provider (10) When I read/hear something relevant to my health I bring it up with my doctor

Sample 1 a = 0.73 Sample 2 a = 0.60 a = 0.73 Test–retest = 0.89

Not provided

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Patient participation in clinical encounters, B Mavis et al. Table 1 Continued Measure name (source)

Sample

(Maibach et al.35)

10. Patient Activation Scale (Williams & Heller36)

national sample

N = 9520 respondents to the Medicare Current Beneficiary Survey

dependence, based on health information seeking, health status and health behaviours Review of published literature and expert opinion

Segmentation of respondents into active, passive, high effort and complacent groups based on health knowledge, health and preventive behaviour and health-care utilization measures

Kim alliance scale Derived from the therapeutic alliance concept of negotiated treatment goals and patient–provider partnership, this measure characterizes patients’ ratings of collaboration, involvement, communication and empowerment within patient–provider encounters. Initial item development and review was conducted by content experts; subsequent testing was based on a sample of 68 registered nurses who had encounters as a patient with a health-care provider in the prior 2 years. The measure was found to be associated with another measure of relationship but not with health locus of

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Subscales (no. of items) and sample items

Validity

I leave it to doctor to make right decisions about my health I rely on doctor to tell me everything I need to know to manage my health Assertiveness with Doctor (3) How likely are you to change doctors if you are dissatisfied with the way you and your doctor communicate? How likely are you to tell your doctor when you disagree with him? Do you talk with your doctor about your options if you need tests or followup? Active and Shared Decision Making (2) Do you bring with you to your doctor visits a list of questions you want to cover? Do you take a list of your prescribed medications to your doctor visit?

Reliability

a = 0.55

a = 0.51

control. The final version of the measure16 contains 30 items representing four scales: collaboration, communication, integration and empowerment. Items related to patient participation are found within each of these scales. The four scales were found to have high internal consistency. The measure can be used in any type of clinical encounter. Krantz health opinion survey This is the oldest of the measures included in this review; it was developed at a time of rising patient consumerism within health-care delivery, and the recognition that active patient

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participation in health care could positively influence health outcomes. The paper31 documents a series of studies with university students to refine relevant items and determine item reliability and validity. A factor analysis of the original pool of 40 items resulted in a two-factor solution based on 16 items: behavioural involvement and information seeking. The items included in the information seeking subscale are most relevant to the current review and describe patient participation in terms of inquisitiveness, which was operationalized as a desire to ask questions and be informed of health-care decisions. The authors discuss the use of this measure in terms of patient expectations and preferences as well as the congruence of patient and provider expectations. Effective consumer scale These items measure effective consumer participation in health care as part of the Effective Musculoskeletal Consumer Project.25 An initial questionnaire was constructed of 48 items representing four categories of behaviours associated with participation in health care. Subjects were identified from arthritis consumer organization membership lists in Canada and Australia. The goal was to create a unidimensional scale with a single total score. After pilot testing and psychometric analyses, a subsequent expert review resulted in a 17-item version of the scale. This shorter form was developed for use in validation studies reducing the burden to respondents asked to complete multiple questionnaires.32 Additional studies have since established the reliability and validity of this shorter version.33 Although developed within the context of arthritis, the wording makes these items applicable to many health problems. Perceived involvement in care scale This measure describes patient involvement in terms of doctor facilitation, patient information and patient decision making. The two patient-focused subscales have items related to

patient participation. The three subscales can be added to create an overall participation score based on 13 items. The model underlying this measure is based on a consumer-driven shared decision making approach that was expanded to more broadly represent patient perceptions of the physician–patient encounter. The measure was developed using multiple samples of primary care outpatients. The results of three studies are presented, documenting the measure development and the positive relationship of the subscale scores to measures of satisfaction and illness attitudes, such as understanding, reassurance and perceived control.34 Communication with physician scale Developed as part of a large study of how patients manage chronic disease, this questionnaire focuses on patient behaviours, beliefs and health outcomes,27 and is based on a model of patient self-efficacy and empowerment. The items for this measure were developed based on a review of the literature, expert opinion and focus groups with patients. This measure has three items, each representing patients’ engagement in communication with their physician. Each item is scored on a six-point scale related to the frequency of the behaviour (e.g. How often do you prepare a list of questions for your doctor?), and the measure is scored as the mean of the three ratings, with a higher score representing better patient communication with the physician. Consumer health information preferences scale Based on a social cognitive conceptual framework, this measure examines the self-efficacy, outcome expectancies and other cognitive factors associated with health decision making.35 Thirty-eight items were tested using data derived from a national sample of 2636 adults with the goal of understanding consumer health information preferences. Five subscales are described: prevention orientation, relationship with health-care provider, self-efficacy for

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Patient participation in clinical encounters, B Mavis et al.

health information, perceived importance of health information, and health informationseeking behaviour. Reliability information is not provided. A 10-item screening instrument is described for segmenting respondents into one of four groups based on degree of engagement in health enhancement and the degree of independence in health decision making. These groups were found to differ in terms of health status and health information usage. Four of the items in the screening instrument are specifically related to patient participation in clinical encounters. Patient activation scale This measure follows from the work of Maibach et al.35 described above, also based on a social cognitive framework. This study focused on the development of a segmentation tool for Medicare beneficiaries to assist in the development and implementation of health education and outreach programmes specific to older adults. Fifteen items are divided among five subscales: self-care self-efficacy, doctor relationship and communication, assertiveness with doctor, active and shared decision making, and health information seeking. Items related to patient participation are found throughout the measure. Four respondent subgroups were identified related to motivation and decisionmaking skills; these subgroups were found to differ on a variety of demographic characteristics, health knowledge and skills, preventive health behaviours and health-care utilization. A two-item screening version of the scale is described for segmentation purposes.36

Discussion This paper reviewed measures of patient participation, with a specific focus on patients’ selfreports from their clinical encounters with providers. The common feature of the measures in this review is that all of them include items that represent actions taken by patients in clinical encounters with physicians or other providers. Part of the challenge of this review was

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isolating the concept of participation, which overlaps with many closely related concepts. Five major families of measures were identified in this review, representing the concepts closely associated with participation: personal self-efficacy and empowerment, perspectives related to interpersonal relationships and therapeutic alliance, patient preferences and quality decision making, shared decision making guiding treatment decisions and more summative consumer approaches related to patient satisfaction. This complicated lineage reflects the historical roots and evolution of thought underlying the measurement of participation, as well as the vagaries of the language used to describe participation. While patient participation plays an important role in all of these models, the patient’s participation might not be central to the model and therefore might not be part of any measure that is developed. Thus this review focused on measures with the common feature of patient participation drawn from across a broad conceptual landscape and hopefully clarified some of the intricate relationships among these concepts. The psychometric qualities of the measures show considerable variability. Reliability, mostly quantified in terms of internal consistency, was found to be high for most of the measures and subscales included in this review. There were two studies that did not report any index of reliability as part of their measure development. Validity was demonstrated in a wide variety of ways, and some kind of validity study was conducted for all of the measures included in this review. However, the samples upon which the various measures were developed and validated varied considerably in size (N = 12–9520), indicating that some validity estimates are more stable than others. Similarly, the samples were comprised of groups as varied as university students, registered nurses, hospitalized cardiac patients and Medicaid recipients to name a few. The generalizability for many of these measures is unknown when applied to samples with characteristics different from those of the original development group. As a cautionary tale, Simon et al.20 reported

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evidence to suggest that the same measure used in samples with different medical conditions did not function consistently across different patient groups. While one of the inclusion criteria for this review was that item wording not be disease-specific thereby enhancing the possibility of applying the measure in multiple settings, the experience of Simon et al.20 suggests caution in this regard. Omitted from the review were measures that relied on a perspective other than that of patients such as family members, nurses or other health providers, as well as measures based on observational assessments. There are a number of measures of this type that were beyond the scope of this review. Also left out of this review were some significant measures related to patient participation that were outside of the context of patient–provider encounters. For example, the Patient Activation Measure developed by Hibbard et al.7 has been used in a wide variety of studies, and has helped refine the concept of patient participation. Despite its value in multiple studies, as the focus of that measure is not on patient–provider interactions, it has not been included in this review. Overall, among many of the measures included in this review, we found whole subscales related to patient participation in clinical encounters. While these measures represent multiple theoretical perspectives, various questionnaire lengths and varying settings and applications, they have demonstrated validity as patient self-reports. They are readily adaptable to multiple research and evaluation settings. These measures have value for investigators interested in patient self-reported participation in their health care as it relates to their encounters with their providers. The measures in this review tended to have significant relationships with other allied concepts such as therapeutic alliance, satisfaction or empowerment. Many of these measures will interest investigators seeking more comprehensive measures of patients’ experiences with their providers, where participation is one of multiple domains rated by the patient. The measures included in this review are limited to patient self-reports; their relationship with

other data collection methods such as observational measures is unclear as is their consistency with patient behaviour reports obtained from other sources such as family members, friends or health-care providers.

Conclusion Measuring the participation of patients in various aspects of their health care is no longer solely a research issue. Measures of patients’ participation in their health care are central to efforts to understand patient behaviour and enhance the quality of health-care delivery and improve health outcomes. Several of the measures identified in this review can contribute to both research and policy. The work of Williams and Heller34 demonstrates the application of participation measures to develop segmentation strategies for public outreach campaigns. Their rubric supports the development of messages tailored to specific patient population segments, based on decision-making skills and patient motivation. Other examples are the US national initiatives to measure health-care quality supported by regulatory and non-profit organizations. Surveys such as the Consumer Assessment of Healthcare Providers and Systems (CAHPS) enhance accountability, based on patients’ reports of the actions of providers and their practice staff.37 Measures such as CAHPS were not included in this review because patients are asked to evaluate provider behaviour rather than report their own participation in an encounter. However, they have the potential to support increased patient participation by including provider-driven shared decision making in the definition of high quality care. Measures based on the self-reported experiences of patients represent one dimension of physician performance and will play an important role in accountability initiatives such as pay-for-performance and the development of public quality-related physician report cards.38,39 While patient participation is not central to the self-reported patient experiences that are currently captured in these large scale data collection efforts, as these efforts evolve

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Patient participation in clinical encounters, B Mavis et al.

there is likely to be interest in issues of patient empowerment and the quality of patient–physician encounters. The expansion to include these types of patient experiences will round out how patient participation is operationalized, and it will be more consistent with the four primary attributes identified by Sahlsten et al.12

Acknowledgement Support for this study was provided by the Center for Advancing Health, 2000 Florida Ave., NW, Suite 210, Washington, DC 20009-1231.

Declarations The authors have no conflicts of interest to declare.

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Appendix 1 MEDLINE PubMed Search Strategy 1. Patient participation[ti] 2. Consumer participation[ti] 3. Consumer participation [majr] (allow explode: also takes more narrow terms) 4. Patient activation[ti] 5. Patient empowerment[ti] 6. 1 OR 2 OR 3 OR 4 OR 5 7. Instrument*[tiab] 8. Measure*[tiab] 9. Data collection[mesh:noexplode] 10. Health-care surveys[mesh:noexplode] 11. Health surveys[mesh:noexplode] 12. Questionnaies[mesh:noexplode] 13. Research/methods[mesh] 14. Questionnaire*[tiab] 15. Survey*[tiab] 16. Scale*[tiab] 17. 7 OR 8 OR 9 OR 10 OR 11 OR 12 OR 13 OR 14 OR 15 18. 6 AND 17 19. Limit 18 to English, with abstracts, and year =>1975 – February 2012

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CINAHL (through EBSCO) Strategy

PsycINFO (CSA now Proquest platforms)

(Note: MH tag means exact subject heading. The plus sign+ after a subject heading allows term to be expanded to take all related more narrow terms. Words and phases in double quotes cause exact searches in all fields) 1. (MH Consumer participation) OR ‘patient participation’ OR ‘patient empowerment’ OR ‘patient activation’ 2. (MH surveys) OR ‘surveys*’ 3. (MH data collection+) OR ‘data collection’ OR ‘questionnaire*’ OR (MH scales) OR ‘scale*’ OR ‘instrument*’ 4. 1 AND (2 OR 3) 5. Limit 4 to English Language and Published Date from January 1, 1975 – February 21, 2012

(Note: the prefix EXACT denotes an official Thesaurus Heading) 1. EXACT(‘Client participation’) 2. ‘patient participation’ 3. ’Patient empowerment’ 4. ‘patient activation’ 5. 1 OR 2 OR 3 OR 4 6. EXACT(‘attitude measurement’ OR ‘Questionnaires’ OR Attitude measures’ OR ‘Surveys’) ‘Rating Scales’ OR ‘Measurement’) 7. ’instrument*’ 8. 6 OR 7 9. 5 AND 8 10. Limit to English and publication dates: 01/ 01/1975 – 02/28/2012

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