Key Points
- When it comes to inflammatory arthritis, doctors look at specific lab tests, physical findings, and X-rays to see how their patient is doing.
- There has been a gap between what providers are measuring and what patients feel is important when it comes to their healthcare.
- Clifton Bingham III, Associate Professor of Medicine and director of the Johns Hopkins Arthritis Center, Dr. Susan Bartlett, Adjunct Associate Professor of Medicine at Johns Hopkins University, and their research team looked for a way to bridge this gap between patients and providers.
- In 2012, Dr. Bingham received a research award from PCORI called “Integrating Patient-Centered Outcomes in Arthritis Clinical Care” that we call our PCORI pilot study.
- The research team collected information that came directly from the patient about their symptoms called patient-reported outcomes, or PROs when people with rheumatoid arthritis were seen for their clinic visits.
- The information from patients about their symptoms was given to the doctors and patients to discuss.
- The team wanted to know if patients and doctors thought this information was helpful. They also wanted to know how doctors and patients would use this information to make decisions about care.
Have you ever gone to a doctor’s appointment with a number of questions related to your health, and then forget about them the moment your doctor walks in the room? The conversation quickly changes from your lab results, to different treatment options, to an entirely new set of questions. While the doctor has your best interests in mind, they may not ultimately ask or answer the questions that you find most important.
What do the doctors usually ask to determine your health-related quality of life (HRQL), and what questions do you really want them to ask?
How Do Doctors Evaluate and Treat Rheumatoid Arthritis
Arthritis, a common condition found in the population, is the leading cause of disability in the United States. Rheumatoid arthritis (RA) is the most common form of inflammatory arthritis that is also a type of autoimmune disease. RA can be a disabling and painful disease, and can significantly affect the quality of life for those who live with it. The symptoms of RA can affect a patient’s physical, mental, and social health on a daily basis.
When treating RA patients, providers use different methods to determine how much inflammation is taking place in the joints and in the body. The doctor can use this information to determine which medications could be used to control the disease. But not all people living with RA have the same disease characteristics. People with RA experience a lot of different symptoms, and are impacted differently in their lives. With this diversity it can be hard for doctors to tailor treatments to meet an individual patient’s goals and expectations.
Clinical Results vs. Patient Reality
Doctors and other health care providers ask: “How can we know what is important to you?” and “What do you want over the course of your treatment?”
The doctor will typically see if you have any swollen or tender joints, nodules, signs of joint damage, lab results and changes in your joint imaging.
For example, a doctor may see a patient and notice that the swelling in their joints has gone down and that their lab work has improved. It seems like the patient is doing better, but the patient may not feel the same way. For example, if the patient thinks the pain is better but is still having severe fatigue that was not there before the arthritis started, are they good enough? If the patient loves to work in the garden but still cannot plant seeds or hold a shovel, would they agree their quality of life has improved enough yet? Just looking at the joints and blood tests does not give the whole picture of what the worst symptoms are or how these symptoms are affecting their patients every day.
As Dr. Clifton Bingham, Associate Professor at Johns Hopkins and the study principal investigator said, “There was a gap between patient and provider communication when it came to measuring the patient’s daily symptoms of their rheumatic diseases; or, more specifically symptoms that were important to the patient.” Dr. Bingham, who directs the Johns Hopkins Arthritis Center and Dr. Susan Bartlett, Adjunct Associate Professor at Johns Hopkins, along with their research team sought a way to bridge the gap between what patients feel is important and what providers feel is important related to care.
Finding Out What’s Important
What is the best way to find out what patients feel is important? You ask!
In 2012, Dr. Bingham received a research award from the Patient-Centered Outcomes Research Institute (PCORI) for the “Integrating Patient-Centered Outcomes in Arthritis Clinical Care” that we call the PCORI pilot study. PCORI is an independent non-profit organization that focuses on improving health care decisions and outcomes by using evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.
This PCORI Pilot Study used a number of different patient-reported outcomes (PROs) to help patients become more aware of how they were living with their disease, and to help their doctors understand which symptoms patients were experiencing and how their illness was impacting their lives. These PROs included the system called PROMIS that was developed by the National Institutes of Health. PROMIS is a large collection of PROs that can be administered through paper forms or a computer. It provides a score that can tell patients how they compare with general national average in relation to a particular symptom.
The results from these different PROs were given to rheumatoid arthritis patients and their providers at each clinic visit. The research team wanted to know what patients and doctors thought about the information and how this information could be used. They also wanted to understand if patients and doctors thought that the extra time collecting this information (and using a tablet computer) was worth it.
Here is how we developed the protocol and research process for patients who participated for the PCORI Pilot Study.
ACKNOWLEDGEMENTS AND DISCLAIMERS: The research project described was funded through a Pilot Project Award (IP2-PI0000737) from the Patient Centered Outcomes Research Institute (PCORI) awarded to Dr. Clifton Bingham. Funding to enable the development of material concerning this project was provided in part through a Eugene Washington PCORI Engagement Award (EAIN-1988). This work described has also been supported through the Rheumatic Diseases Research Core Center funded by the National Institutes of Health (NIH) and the National Institute of Arthritis, Musculoskeletal, and Skin Diseases (NIAMS) (P30-AR053503), the Ira Fine Discovery Fund, the Don and Dorothy Stabler Foundation, and the Camille Julia Morgan Arthritis Research and Education Fund. All statements on this website, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or Methodology Committee, or of NIAMS or NIH. We thank the patients, staff, and physicians for their participation in this study as well as our external stakeholders and advisors. Special thanks to CreakyJoints® (www.CreakyJoints.org) for their time and support for this project and the engagement of an activated online community of people living with arthritis.
