Results Summary

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.

Project Information

Maria O'Connell, PhD
Yale University
$682,509
Development of a Supported Decision-Making Tool for Persons with Chronic Illness

Key Dates

June 2012
December 2014
2012
2014

Study Registration Information

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Has Results
Award Type
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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022