When you have a complex autoimmune disease like lupus — which often requires taking multiple medications and affects many different parts of the body — there’s usually a lot to cover, even in routine doctor visits.

Your rheumatologist (a doctor who typically manages overall care for lupus) will have a lot of questions about how you’re doing, how you feel your treatment is working, changes in your symptoms, and more.

But it’s not always easy to remember every important detail from the weeks before your visit, especially if you have brain fog, feel anxious or distracted, or happen to be feeling well on the day of your appointment.

Enter the power of short surveys (known as patient-reported outcomes, or PROs) about symptoms and quality-of-life issues that matter to patients, such as physical function, pain, fatigue, cognitive abilities, sleep disturbance, anxiety, depression, and more.

Sometimes doctors have you fill out questionnaires right before your appointment, but it’s becoming easier for patients to answer these on their own using apps/website. What’s more, these tools allow you to complete them at any time (say, on a weekly or monthly basis) instead of only just before a doctor visit.

ArthritisPower®, for example, is a patient-centered research registry and application from our non-profit, the Global Healthy Living Foundation. It allows people with lupus and other rheumatic and musculoskeletal diseases like arthritis to select PROs they want to track and fill out surveys regularly on their smartphone or computer.

So, how does filling out these short symptom surveys ahead of rheumatology appointments impact doctor-patient communication — and overall patient care?

Rheumatologist Shanthini Kasturi, MD, MS, Assistant Professor of Medicine at Tufts University School of Medicine in Boston, and a team of other research partners, including the Global Healthy Living Foundation (GHLF), set out to learn more about this.

In research presented during ACR Convergence 2020, the annual meeting of the American College of Rheumatology, the research team asked 105 lupus patients to complete patient-reported outcome surveys at the start of the study and again before two routinely scheduled visits with their rheumatologist.

  • Both patients and doctors received scores before the visit.
  • Both patients and doctors answered questions after the visit about how useful the PROs were during the visit.

Here are some key learnings from the study.

ArthritisPower Infographic Lupus Patient Reported Outcomes

1. Both patients and doctors said filling out the PRO surveys was useful

Patients were asked to track various symptoms or quality-of-life issues that previous research has shown are important to people with lupus, says Dr. Kasturi. These included:

  • Lupus activity
  • Physical function
  • Pain
  • Fatigue
  • Social participation
  • Cognitive function
  • Sleep disturbance
  • Anxiety
  • Depression
  • Intimate relationships
  • Planning
  • Body image
  • Burden to others

Some 91 percent of patients and 83 percent of doctors agreed that having people complete the PRO surveys was useful information to have during doctor visits.

2. Both patients and doctors said filling out the surveys improved communication

The vast majority of doctors (72 percent) and patients (86 percent) agreed that the surveys helped them communicate better.

“Patients found that the surveys improved communication in many ways, including by helping them reflect on their illness, remind them of symptoms they experienced, and by bringing attention to issues that they otherwise may not have brought up,” says Dr. Kasturi.

3. The PRO surveys may have helped enhanced patient care

One way the surveys may help is by identifying issues that patients and doctors need to talk about during the visit.

“Physicians reported that they learned new information about patients’ moods and fatigue,” says Dr. Kasturi. “Several doctors said that [the surveys] gave them insight into both their patients’ lupus and personal lives. A few said that it allowed patients to establish what was attributed to their lupus and what was attributed to something else they might be going through. Most doctors said that it guided their conversation, letting them know what would be important to bring up, discuss, and look further into.”

About half of doctors and 43 percent of patients said that the PRO surveys impacted their treatment plan/how their lupus is managed.

“In one case, the surveys led the provider to discover that the patient’s living situation had changed, and she no longer had access to medications,” say Dr. Kasturi.

4. The PRO surveys did not affect visit length

Importantly, the doctor visits were not any longer when the PRO surveys were discussed compared to when they were not. (In both cases visits were about 20 minutes long.)

This is an important takeaway, says Dr. Kasturi, because “physicians are sometimes concerned that there is no time to discuss [patient surveys] in visits that are already time-pressured. Many of the providers participating in the study found that the surveys could actually make visits more efficient by highlighting important topics and focusing the discussion.”

In conclusion, this study suggests that when rheumatologists and patients are on the same page with patients filling out surveys about their symptoms and quality of life, it can enhance communication and even affect treatment decisions.

“Lupus patients and their doctors found [the surveys] helpful in so many ways,” says Dr. Kasturi. “They were useful for tracking and validating symptoms, and setting the agenda for medical visits. Perhaps most importantly, the surveys connected patients and doctors by reflecting the lived experience of lupus.”

“The ArthritisPower team believes in the power of patient-reported outcomes as a tool for understanding the impact of disease activity as well for improving the shared decision-making process,” says study co-author David Curtis, Director of Technology and Data Services for the Global Healthy Living Foundation. “Patients in this study felt that their PRO surveys helped their provider understand what they had been going through in a way that is hard to achieve in their conversations alone.”

Found This Study Interesting? Get Involved

If you are diagnosed with lupus or another rheumatic or musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

Kasturi S, et al. Implementation of Web-Based Patient-Reported Outcome Measures (PROMs) in SLE Clinical Care: A Multi-Center Prospective Cohort Study. [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/implementation-of-web-based-patient-reported-outcome-measures-proms-in-sle-clinical-care-a-multi-center-prospective-cohort-study.

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