Relationships With Lupus Healthcare Providers
Last updated: March 2023
We recently surveyed hundreds of people with lupus for our 2020 Lupus In America survey. We asked about all aspects of life with lupus, including healthcare and the relationship people with lupus had with their doctor. Some of the responses we received are below.
The most commonly seen doctor for both diagnosis and current treatment of lupus was a rheumatologist. About 64 percent of participants said they saw a rheumatologist for their initial diagnosis, while over 75 percent see a rheumatologist for their ongoing treatment. The next most commonly visited doctor for diagnosis and treatment was a primary care doctor or family doctor. Just over 1 in 10 participants saw their primary care doctor for their initial diagnosis or still see this doctor for treatment. Only 2 percent of respondents said they do not currently see a doctor for the management of their lupus.
Most commonly, the doctors visited by people with lupus are associated with a community or local hospital. About 28 percent said their doctor was affiliated with one of these healthcare systems. Another 22 percent said their doctor was associated with a large, academic healthcare facility (like a university hospital), and 21 percent had a doctor linked to a specialty treatment center that focuses only on certain conditions. Only 7 percent and 1 percent of respondents said their doctor is associated with a community health center or a VA (Veterans Administration) hospital.
Overall, it seems most people with lupus were diagnosed by a rheumatologist and currently still see that type of doctor. This makes sense since rheumatologists specialize in treating autoimmune conditions like lupus. Oftentimes, these kinds of doctors are associated with a healthcare system, like a local hospital or a larger academic medical center.
Communication with healthcare providers
When it comes to building a relationship with a doctor, there are many factors to consider. One large component of this is communication. Many survey respondents chimed in on their experiences communicating with their healthcare provider. For example, almost 70 percent said they felt comfortable talking about all aspects of their lupus with their doctor. Just under 60 percent said they feel as though their doctor clearly explains their treatment options. These results are encouraging, and show that many are having good conversations with their doctors.
Although these are promising results, there are still some concerns with doctors and the relationship built. For example, under half of all participants said that their doctor regularly discusses their quality of life with them. Maintaining a high quality of life is a huge part of managing lupus. Not talking about all aspects of the condition can impact a person’s day-to-day experiences, and can greatly impact mood, pain, relationships, and more.
Healthcare provider satisfaction
As far as the overall treatment and appointment experience goes, 58 percent said they are satisfied with the care they receive from their healthcare professional. Further, 56 percent said they receive easy-to-understand test results from their doctor, and 52 percent say they and their doctor completely agree on the severity of their lupus. These numbers are more than half, but show that there is still room to grow when it comes to satisfaction with healthcare.
On a more positive note, only 21 percent of respondents said they felt rushed during their appointments. Although healthcare clinics and doctors can have hectic schedules, it is promising to hear that many people feel as though their doctor is paying attention to them and giving them the time they need and deserve during appointments.
How is your relationship with your healthcare provider? What kinds of things do you talk about, and how do they affect your life with lupus?
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?