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“There's a discrepancy between what patients feel like is important to them and what clinicians think is important to them, which is probably true in all of medicine,” Alfred Aguirre, MD, stated.
Patient-reported outcomes (PROs) have been highlighted in rheumatology research and clinical practice in recent years, underscoring that the opinions of patients can greatly impact the treatment and management of these patients. This is particularly important in marginalized patients, such as women and Black and Hispanic patients, and certain conditions, such as lupus, which disproportionately affect these patient populations. More and more, rheumatologists are seeing the benefits of utilizing PROs in a clinical setting as a guide to help inform and personalize analgesic strategies for patients.
Andrea Chadwick, MD, Medical Director of Swing Care and Associate Professor in the Department of Anesthesiology, Pain, and Perioperative Medicine at the University of Kansas School of Medicine, emphasized that the number of PROs have expanded in recent years, enabling doctors to assess patients with fibromyalgia more thoroughly. Whereas in the past, rheumatologists relied on a tender point exam and the Beck Depression Inventory (BDI), new scales including catastrophic thinking, resilience, and stress have been added to the arsenal of patient evaluation.
“The makeup of each fibromyalgia patient is different in terms of what their pain phenotype is, and PROs are great at honing in on those specific characteristics for patients,” Chadwick explained. “For example, you can identify whether a particular fibromyalgia patient has more difficulty with fatigue and sleep versus another fibromyalgia patient who may struggle with significant sensitivity to their skin and poor physical functioning.”
Similar to fibromyalgia syndrome, certain rheumatic diseases, such as lupus, disproportionately affect women and minorities, who often express feeling unheard. PROs are an essential tool to ensure that rheumatologists can hear the concerns voiced by their patients and validate their experience. As some patients have reported feeling reluctant to share their experience or symptoms if not asked directly, being able to use a tool that measures and tracks symptom burden, health-related quality of life, functional status, behaviors, and overall health care experience is vital.
“There's a discrepancy between what patients feel like is important to them and what clinicians think is important to them, which is probably true in all of medicine,” Alfred Aguirre, MD, Assistant Clinical Professor at the University of California, San Francisco, hypothesized.
While other diseases and conditions have more clear-cut definitions of remission and management, in rheumatology, a clinician generally has to rely on a variety of different data inputs, including clinical examinations and integration of data elements to ascertain if a patient’s condition is under control, thus making it a bit more subjective when compared with other fields. As patients often have different symptom manifestations, it’s important to gain the perspective of the patient and use that as a part of the management plan.
“Sometimes what the doctor thinks is at odds with what the patient feels is important,” Aguirre explained. “I think that insight has driven a lot of the research on patient-reported outcomes. And we have discovered a lot of interesting things, such as the importance of fatigue in systemic lupus erythematosus (SLE), for instance, and how that is such a disabling and mysterious symptom that we still don’t fully understand.”
Additionally, rheumatic diseases, particularly in lupus and fibromyalgia, are often quite heterogenous. By acquiring a patient’s perspective, a rheumatologist is able to more effectively understand not only the disease, but also their goals and aspirations when it comes to their health and life, in addition to the unique factors related to care.
“No 2 patients have the same ‘brand’ of lupus or the same experience when it comes to their disease or how it impacts their life,” Saira Z Sheikh, MD,Director of the Clinical Trials Program at the University of North Carolina at Chapel Hill (UNC) Thurston Arthritis Research Center, the UNC Rheumatology Lupus Clinic, and Vice-Chair of the Lupus Clinical Investigators Network, emphasized. “How can we effectively care for our patients, if we do not assess or measure what they are experiencing and what is most impactful to them?”
Aguirre underscores that rheumatologists should understand that there are key domains outside of what is normally asked during clinical encounters. Patient-reported outcome measures, including ones that focus on cognitive function and sleep, which are often highly rated by patients with SLE, are not only easy to implement via questionnaires, but can also be used to track a patient’s progress over time.
“In the last 3 to 4 years, general research has been focusing more on patient-reported outcomes because it is the true representation of what's going on in real life,” Ayman Askari, MD, consultant rheumatologist at the Robert Jones and Agnes Hunt Orthopedic Hospital, explained. “My patients are complicated. In trials, they often choose patients who have a single illness or disease and are similar in age. Real world data represents a better value.”
In recent years, patient advocacy groups, such as CreakyJoints, the Lupus Research Alliance (LRA), and Mymee, have focused attention on the patient experience and using self-evidence to help patients manage their conditions and influence further research in this field. These organizations provide a necessary source of independence within their disease journey.
“As an autoimmune patient myself, I know about the daily struggle so many patients face in coping with uncontrolled symptoms because I’ve been there,” Mette Dyhrberg, founder of the self-advocacy platform Mymee explained.
Using a simple Excel spreadsheet, Dyhrberg, who has struggled with multiple autoimmune diseases for most of her life, began systematically tracking symptoms, habits, stress levels, and diet to discover any patterns and identify her personal triggers. After learning how to manage her conditions, she became determined to help patients like herself uncover their own unique triggers using her approach, only more quickly and efficiently via a decade-long journey of building a clinically validated solutions focused on patients struggling with uncontrolled symptoms, despite treatment.
Further, recent studies from CreakyJoints and the Global Healthy Living Foundation presented at the American College of Rheumatology (ACR) Convergence 2022 realize the benefit of taking PROs into consideration in rheumatology research by examining the specific patient perspective of support and educational needs of LatinX and Hispanic patients with rheumatoid arthritis and well as how to best prioritize patient-centered research to reduce vaccine hesitancy in patients with autoimmune diseases.
A recent research program developed by Lupus Therapeutic (LT), called the LT Patient Advocates for Lupus Studies (PALS) program, serves as a model of patient-engaged research and provides evidence of a practical program that can be used to increase participation of underrepresented and ethnically diverse patients in lupus clinical trials.
Sheikh emphasized that the research team at LT and LRA makes an intentional effort to incorporate the patient voice into all initiatives they design.
“We work closely in partnership with patients, recognizing them as key stakeholders, and believe that clinical trials, clinical research, and health care in general needs to be centered around the patient experience,” she stated.
Experts agree that there is a need to implement PROs in routine clinical settings as a strategy to gain information on a population level to improve health and wish that these tools were more readily available for easy use in clinics. However, Chadwick, among others, expressed that more practitioners are recognizing the value of assessing the patient perspective in recent years.
“Moving into the future, the winning combination is utilizing both PROs and the physician’s assessment collectively in order to assess disease activity, quality of life, and effectiveness of treatment and therapeutics both in research and in clinical practice,” Sheikh concluded.