Asking Questions: The effect of a brief intervention on measures of patient activation in community health center settings Darwin Deen, MD, MS Wei-Hsin Lu, PhD Marthe Gold, MD, MPH Department of Community Health and Social Medicine Sophie Davis School of Biomedical Education City College at the City University of New York

Patient-Centered Medical Home Care is facilitated by . . . health information exchange and other means to ensure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner Quality and safety are hallmarks of a medical home for which patients actively participate in decision-making In addition to structural, administrative and financial change, fundamental reform of the U.S. medical care delivery system requires that the delivery system and its users engage their interactions in a manner that promotes understanding on the part of both sides. Patients need to understand their options and the evidence that supports them, and providers need to understand patients needs and preferences. Visions of Patient-Centered Medical Homes and models for excellence in chronic illness care each rest on assumptions that patients and providers gain facility in communicating. Effective communication between providers and patients has a demonstrated association with better health outcomes www.pcpcc.net/content/joint-principles-patient-centered-medical-home

Developing patient capacity for participating in decision making To be a participant in care patients need to have the necessary knowledge, skills, and confidence Activation is a process of gaining knowledge, skills, and confidence by Understanding the need to care of one’s health Understanding that one’s actions are linked to one’s health outcomes

Activated Patients… have more healthful behaviors, have more effective chronic disease self-management skills, engage in more successful information gathering from the health system have improved provider-patient communication, and have better health outcomes

Stages of Patient Activation Hibbard, et al 2004 Stage 1: May not yet believe that the patient role is important, may still believe that patients are passive recipients of care. Stage 2: Lack the basic facts or have not connected the facts into a larger understanding about their health or recommended health regimens. Stage 3: Have the key facts and are beginning to take action but may lack confidence and skill to support new behaviors. Stage 4: Adopted new behaviors but may not be able to maintain them in the face of life stress or health crisis.

Regular exercise, low fat diet, fruits & vegetables and PAM Stages

Consumeristic Behaviors and PAM Stages

Study Context ▪ Effective provider-patient communication has been shown to be less successful for under-represented minority (URM) and lower SES population (Willems et al, 2005 Patient Educ Couns) Patients who ask more questions are reported to obtain more relevant information from providers, be more engaged in their care, and feel more empowered in their office visits URM and lower SES individuals have been found to ask fewer questions and to receive less information from their health care encounters (Johnson et al, 2004 Am J Public Health; Cooper et al 2006 J Gen Intern Med) Documented differences in information seeking behavior by less advantaged individuals has led to efforts to get patients to ask more questions These efforts build on strategies of furnishing questions to patients to prepare them for their visit

Context (cont) Generic strategies for increasing patient question-asking have been typically built on providing prepared questions that individuals bring into their encounters However, questions that do not arise from patient generated concerns may fail to provide the questioner with information of greatest import to them In addition, providing prescribed questions carries an implicit message that the questioner lacks the ability to determine the information they most need We sought to develop a skill-building question development intervention method that would promote patient confidence and empowerment

Study Objectives To design a simple, low-intensity patient activation intervention (PAI) that could be delivered in a waiting room setting based on experiences of the Right Question Project To evaluate the impact of that intervention on patient activation as measured by the Patient Activation Measure and post visit interviews

Methods Setting: Five community health centers in NYC, summer 2009 Participant Eligibility: 18 years or older/ speaks English and/or Spanish Patients were approached in health center waiting rooms by interviewers (medical students) Those consenting to participate filled out surveys including PAM, Patient Preference for Control (PPC), sociodemographic and health status information Participants underwent PAI Post visit, participants resurveyed with PAM and open-ended questions about their experience of the PAI

Goal of Activation Process of the Patient Activation Intervention Assist patients, through information gathering, to gain an active role in health encounters and participate in decision making help patients understand why questions are important help patients relate question-asking to decisions about medical care help patients be more comfortable asking questions of their health care providers

The Patient Activation Intervention (PAI) Approach patients in the health center waiting room Step 2: Understanding decisions 1.Define a “decision” 2.Describe influence of question asking on decision-making Step 3: Choose a focus, i.e. new complaint; follow-up; medication; treatment; referral Step 4: Brainstorm questions Step 5: Identify question type Open-ended vs. Close-ended Step 6: Prioritize Identify the most important questions Step 1: Decisions made in everyday life Patient Brings List of Questions to Health Care Visit Average time: 10 minutes Worked with “The Right Question Project” to develop an intervention designed to build patient’s question formulation skills and link them to decision making. 1.Describe a decision made recently in everyday life (e.g. what clothes to wear, how to come to the visit, what to eat for breakfast) and what questions did you need to ask yourself to decide to do what you did? 2. Using subject’s answers, interviewers made explicit the definition of a decision, “choosing one option over two or more” illustrating that the process of DM is aided through the generation of questions 3. Once shared understanding of “decision” was accomplished interviewers stated that decisions wee often made during health care visits, offering several domains where this occurred (sometimes subtly) 4. Patients were then asked if they had any questions they felt would be useful to ask during the current visit and interviewers asked patients to brainstorm as many questions as they felt would be useful within the visit to gain knowledge and help in decision making 5. Next patients were brought through an exercise that differentiated closed ended from open ended questions and reviewed their question list to see if they wished to turn any closed-ended questions into open-ended ones. 6. Patients asked to prioritize which questions would be most useful to pose during their current visit. 7. List given to patient to bring with them 8. Patticipants reminded that asking questions of their medical care provider would improve the care they received.

Activation Score Mean (SD) Results: Pre-PAI Patient Socio-Demographic Characteristics by Patient Activation Level (before intervention) Total (n =252) Stage 1 Stage 2 Stage 3 Stage 4 Activation Score Mean (SD) All Participants (%) 100 31.0% 19.0% 18.3% 31.7% 58.92 (17.69) Age in years: Mean (SD) * 39.85 (16.04) 43.14 (17.85) 41.19 (15.70) 34.43 (14.22) 38.94 (14.66) -- Gender (%) Male 16.7 38.1 14.3 18.6 58.40 (18.49) Female 83.3 29.5 20.0 31.9 59.03 (17.57) Race/Ethnicity (%) African American/Black 34.1 30.2 22.1 29.1 58.48 (17.38) Latino/Hispanic 56.0 30.5 19.9 18.4 31.2 58.65 (16.82) Other 9.9 36.0 16.0 4.0 44.0 61.96 (23.26) Educational Attainment (%) Less than High School 17.9 40.0 22.2 13.3 24.4 54.94 (16.34) High School Graduate or GED 36.3 29.7 25.3 19.8 57.89 (17.32) Some college or above 45.8 27.8 13.0 19.1 61.43 (18.26) Preference for Control (%) ** Passive Role 35.9 35.6 28.9 18.9 55.20 (16.79) Collaborative Role 22.3 33.9 16.1 32.1 58.30 (17.13) Active Role’ 41.8 24.8 12.4 42.9 62.63 (18.15) Note: Variables reported as percentages were tested with chi-square analyses and variables reported as means and standard deviations were tested with ANOVA. * P < .05, ** P < .01 Of 653 patients who were approached, 42% (276) agreed to participate. Excluded from the results are 24 individuals for whom survey information was incomplete. Mean age: 39 Primarily Latino (56%), 34% AA Educational status: High with 46% having greater than high school education. Half had a medical condition for which they saw their provider on a regular basis 42% of participants stated they preferred an “Active” role in their visits, 22% a collaborative role, and 36% a passive role. Pre-intervention PAM scores: 31% Stage 1, 19% stage 2, 18% Stage 3, 31% stage 4. Mean PAM = 58.82, Despite a relatively highly educated HC sample, baseline PAM scores were lower that reported national averages, consistent with the findings of other research. No statistically significant differences by gender, race, ethnicity. Education while potentially “clinically significant” did not achieve statistical significance. Preference for Active role on PPC was A/w higher PAM score.

Post-Intervention Activation Level Crosstabulation table of patient activation level pre & post intervention Pre-Intervention Activation Level Post-Intervention Activation Level Level 1 (least activated) Level 2 Level 3 Level 4 (most activated) 16 (20.5%) 17 (21.8%) 34 (43.6%) 11 (14.1%) 6 (12.5%) (22.9%) (35.4%) 14 (29.2%) 1 (2.2%) 3 (6.5%) 23 (50.0%) 19 (41.3%) (0.0%) 2 (2.5%) 7 (8.8%) 71 (88.8%) PAM scores increased significantly post-PAI, demonstrated by paired-samples t tests: pre-intervention M = 58.9 (SD6.32) vs post intervention mean = 67.4 (SD = 5.99) Chi square tests were used to examine the association between PA levels before and after the intervention. The proportion of patients whose PAM scores did not increase after the intervention is illustrated by the diagonal values circled in blue. 44% of participants moved to a higher level of activation as measured by the PAM, and those at lower levels had the greatest amount of movement. 112 (44%) patients moved to a higher level of activation post intervention 121 (48%) patients were at the same level of activation pre and post intervention

Impact of Patient Activation Intervention on PAM Scores (stratified by Patient Preference for Control in decision making) Impact of PAI on PAM Score by Baseline PPC Patients Preference for Control Pre PAM Score Post PAM Score Change in PAM Score Passive 55.20 64.93 9.73 Collaborative 58.30 67.01 8.71 Active 62.63 69.83 7.2 PAM scores improved regardless of baseline PPC Patients whose preference for control was active had less of a post-intervention increase in PAM scores than those whose baseline preference for control was collaborative or active. The PAI improved PAM scores regardless of baseline PPC. Improvement was statistically and clinically significant

Questions: Patient Activation Measure (Likert Scaled 1-4) When all is said and done, I am the person who is responsible for managing my health. Taking an active role in my own health care is the most important factor in determining my health and ability to function. I am confident that I can take actions that will help prevent or minimize some symptoms or problems associated with my health. I know what each of my prescribed medications does. I am confident that I can tell when I need to go get medical care and when I can handle a health problem myself. I am confident I can tell a doctor concerns I have even when he or she does not ask. I am confident that I can follow through on medical treatments I need to do at home. I understand the nature and causes of my health problems. I know the different medical treatment options available for my health conditions. I have been able to maintain the lifestyle changes for my health condition that I have made. I know how to prevent problems with my health. I am confident I can figure out solutions when new situations or problems arise with my health. I am confident that I can maintain lifestyle changes, like diet and exercise, even during times of stress. The Patient Activation Measure (PAM) was designed to evaluate levels of activation. Patients are scored on the basis of their answers to 13 questions that they scale from strongly disagree to strongly agree. Their answers are summed and produce an overall “activation” score which places them in 1 of 4 stages of activation that suggest different capacities for self management and engagement in care.

Discussion PAM scores increased post-intervention suggesting that PAI may have had an impact But: no control group Could be an effect of PAM/PCC administration PAI may have more impact on individuals who are less likely to envision an active role in their health and health care Sensible on its face, but PPC not well validated If PAI is effective, how potent/sustainable is its impact? Can it lead to changes in patient-provider interactions? Can it lead to changes in behaviors/health outcomes?

Current and Future Directions Studying the impact of PAI v. Decision Aid, v. both in a health center setting with English and Spanish Speakers (funding from Foundation for Informed Medical Decision Making) What is the best way to measure activation and its changes in less advantaged populations? Measurement strategies: instruments Patient behavior changes (within and outside of medical care setting Provider behavior change (interactions; test ordering; referrals) Patient Outcomes: Satisfaction; change in physiologic indicators