PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Patients feel more involved in their care and may have better healthcare results when they can talk to a doctor about their choices and work with them to make decisions. But there aren’t many resources available to help patients identify and share their values, preferences, and goals for their health care with their doctors.

Project Purpose

The goal of this study was to develop a questionnaire to help patients identify and explain their values, preferences, and concerns during an appointment with their doctor.

Methods

This project had three parts. For the first part, the research team interviewed 42 people who were at least 21 years old. These people included

• 22 patients living with a chronic illness
• 10 family members of people with a chronic illness
• 10 doctors who treat chronic illness

The researchers asked participants about their experiences working with their doctors to make decisions about treatment.

For the second part, the research team held group discussions with 91 patients living with chronic illness. The team asked patients the following questions:

• What are the areas of your life that are the most important to you, that you value, that you hope for, and that give you meaning?
• What does a doctor need to know about you in order to provide high-quality care?

The team also conducted an online survey with 60 doctors and nurses. The survey asked doctors and nurses what they needed to know about their patients to provide good health care.

Using the discussions and the survey, the research team identified 100 statements that reflected what was important to patients. Then the research team asked the 91 patients to sort the 100 statements into categories to see how they thought different statements related to each other. They also asked these patients to rate how important each statement was when thinking about what is important to them and their doctors.

In the third part of the project, the research team used the categories of statements to create a questionnaire asking about different aspects of patients’ lives and relationships as well their experiences with health care. Researchers tested the questionnaire with 15 patients living with a chronic illness. The patients filled out the questionnaire and then shared it with their doctor at their next appointment. After the appointment, the researchers called the patients and their doctors and asked them what they thought about the questionnaire. The researchers asked how easy it was to use, how the patient and doctor used it, and if they thought it was helpful. The researchers also asked for suggestions to improve it.

Findings

In the first part of the project, most patients shared stories of times when they felt that a doctor didn’t listen to them, respect them, or trust them. Patients also said that doctors sometimes made decisions about their treatment that didn’t match their own values and preferences. Most patients also shared stories about doctors who had had a significant positive influence on their lives.

Family members talked about the balance between encouraging patients’ independence and providing support.

Doctors said that their ability to make decisions with patients depends on the situation and the characteristics of the patient and doctor.

During the second part of the project, researchers identified six main areas that were important to people with chronic illness:

• Their doctor’s role in their health care
• Their responsibilities in their health care
• Their virtues, values, and core beliefs
• Their connections with others
• Their resources or challenges
• Their person-centered care

During the third part of the project, the patients who tested the questionnaire said that it

• Helped them think about what they wanted in an appointment with a doctor
• Encouraged conversations between doctors and patients about topics like learning about illness, weight, and respecting patients’ time
• Helped change how patients and doctors interacted during appointments

Doctors said that the questionnaire helped them

• Learn useful information about their patients’ lives
• Make decisions with their patients

Limitations

This study was small, and most of the patients earned a low income or had a disability. These patients may not have as many choices as other patients do in their health care, which may mean they have different experiences.

Conclusions

The results from testing the questionnaire showed that filling it out before appointments and sharing it with doctors might help patients and doctors talk about patients’ values. The questionnaire also might help doctors and patients work together to make decisions about the patients’ care.

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Providing opportunities for choice and self-determination is considered a critical component of person-centered medicine, and research suggests that doing so may enhance treatment engagement and outcomes. However, few tools are available that can quickly guide a patient through the critical preliminary process of clarifying one’s values, preferences, and ideals, which form the foundation for personalized health care.

Project Purpose

This study aimed to develop a tool that would assist in the process of identifying and communicating patient preferences, concerns, and values to providers in the context of a treatment appointment.

Study Design

Community-based participatory research using qualitative interviews (Phase 1), concept mapping (Phase 2), and decision-making tool development and pilot testing (Phase 3)

Participants, Interventions, Settings, and Outcomes

Phase 1, qualitative interviews. Participants were 22 persons living with a chronic illness, 10 family members, and 10 physicians. Eligibility criteria included being at least 21 years old and having been diagnosed with a chronic mental and/or physical illness, having a close loved one with chronic illness, or providing care for people with chronic illnesses. Qualitative interviews took place in a location selected by the interviewee, typically at home or another community-based location, or at the researchers’ office at the Yale Program for Recovery and Community Health.

Phase 2, concept mapping. Participants were 91 persons living with a chronic illness and 60 healthcare practitioners (physicians, Registered Nurses, Advanced Practice Registered Nurses, and other direct care providers who responded to an online survey). All concept mapping activities took place at the researchers’ office.

Phase 3, tool development and pilot testing. Based on Phase 2 findings, the research team developed a tool to elicit patient views about the importance of different aspects of one’s life, relationships, and healthcare processes and outcomes. This tool was pilot-tested with 15 persons living with a chronic illness who completed and shared the tool with their doctor at their next appointment. Pilot testing of the instrument was conducted in the doctor’s office during a routine appointment.

Data Sources

Qualitative interviews (Phase 1) were semi-structured, open-ended interviews conducted by trained stakeholder co-researchers.

Concept mapping statement generation sessions (Phase 2), were co-led by two trained stakeholder co-researchers. Qualitative statements were elicited in response to two questions: “What are the areas of your life that are the most important to you, that you value, that you hope for, and that give you meaning?” and “What does a doctor need to know about you in order to provide high-quality care?”

The online practitioner survey was designed using SurveyMonkey and solicited statements from practitioners about things they needed to know about their patients in provide high-quality and person-centered care.

In concept mapping sorting and ranking sessions, participants sorted 100 statements into piles based on perceived similarity to one another. These 100 statements were selected to represent the majority of themes/topics conveyed across all of the statement generation activities. Participants then rated each statement (using a 1–5 Likert scale) according to degree of importance to (1) the individual and (2) his or her doctor.

Participants involved in Phase 3, pilot testing the tool, met with a stakeholder researcher to complete the newly developed tool and then shared the tool with their doctor at their next appointment. Follow-up calls were made using a structured interview to all participants and to providers who consented to be contacted following the patient’s sharing of the tool. Structured interviews contained questions about overall thoughts about the tool, ease of use, utility, feasibility, perceived benefits, and suggestions for medication/future use.

Data Analysis

Qualitative Data Analysis. Qualitative interviews were analyzed using a phenomenological process of four main steps: (1) gaining an overall impression of the text, (2) identifying and sorting themes, (3) condensing themes from codes to meaning, and (4) integrating themes and codes into concepts.

Quantitative Data Analysis. Data from the concept mapping sorting and ranking activities were analyzed using Concept Systems, Inc., software. Concept mapping analysis involved using categorical data to evaluate perceptions of interrelatedness of concepts and define clusters.

Quality of Data and Analysis. Interviewers/facilitators used structured interview techniques for qualitative interviews and concept mapping groups. Research assistants had lived experience with chronic illness and formal training in research methodology, interviewing techniques, and focus group facilitation. A community research advisory board consisted of patient and practitioner stakeholders who played a key role in all phases of research, including development of research questions, analysis and interpretation of data, and tool development.

Findings

Qualitative Interviews (Phase 1). Most patients recalled specific experiences in which they felt like they were not heard, respected, or trusted by a doctor and in which treatment decisions were made that felt inconsistent with their values and preferences. At the same time, most patients were able to identify at least one healthcare provider who they credited with having a significant and positive influence on their lives. The degree of specificity with which these diametrically opposed experiences were recalled was striking and in many ways helped patients have a very clear sense of what they needed and wanted in a healthcare provider. For physicians, the feasibility and success of shared decision making depended on three elements: patient characteristics, physician factors, and contextual factors. Family members described a delicate balance between supporting the autonomy and independence of their loved one while providing support.

Concept Mapping (Phase 2). The researchers identified six primary priorities for people with chronic illness: (1) their doctor’s role in their health care; (2) their own responsibilities in their health care; (3) their virtues, values, and core beliefs; (4) their connections with others; (5) their resources or challenges; and (6) their person-centered care. These six priorities, and the most important items within each, formed the foundation of shared decision-making tool that was subsequently developed.

Pilot Testing of Tool (Phase 3). In follow-up calls after sharing the tool with their provider, participants reviewed the tool favorably and said that it: helped them think through what they wanted out of the appointment; prompted discussions about topics including educational goals, weight, and respecting patients’ time; and, most notably, that the tool seemed to shift the doctor-patient dynamic during the appointment. Providers commented on the utility of such a tool in helping to quickly inform them about pertinent areas of a person’s life and said it was useful in prompting discussions that led to more shared decisions.

Limitations

The study sample consisted largely of individuals with low income or who were on disability and may not have access to preferred health care. The study is also limited in that its scope does not extend to testing the impact of the supported decision making tool.

Conclusions

Results from a pilot administration of the tool suggest that completing the tool before an appointment and sharing the brief summary with practitioners at the beginning of an office visit may promote more “person-centered” interactions and shared decision making throughout the appointment and result in more positive evaluations of the patient-practitioner interactions during the visit.