US Survey in Sarcoidosis Finds Satisfaction With Insurance, But Some Pessimism for Future

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Most people living with sarcoidosis are overall satisfied with their health insurance provider and are not considering changing their medication, according to a U.S.-based survey conducted by Sarcoidosis News.

However, roughly 1 in 3 survey respondents were dissatisfied with their quality of life, and more than a quarter of patients reported being pessimistic about what the future holds. These results indicate that, despite adequate medical care, more should be done in terms of patient support, researchers said.

The survey was conducted in collaboration with BioNews Insights, the research arm of BioNews Services, which publishes the Sarcoidosis News website.

As we see with other rare diseases, there are significant populations of [sarcoidosis] patients who are unsatisfied with their quality of life and/or pessimistic about their futures. These are understandable feelings in response to the circumstances and, yet, also point out the need for further resource allocation to the understanding and improvement of these outcomes,” Jacob Harney, PhD, the research lead at BioNews Insights, said in a statement to Sarcoidosis News.

Conducted from April 27 to June 22, the goal of the online survey was to gain greater insight into the sarcoidosis community, focusing on disease management, treatment plans, medication side effects, insurance, and patient quality of life.

It is our mission to always be working toward improving patient outcomes for all our communities,” Harney said. BioNews Insights is presently conducting research into quality of life indicators across all rare disease communities.” 

Who answered the survey?

In total, 536 people finished the survey. Most of them — 488, or just over 91% — were sarcoidosis patients; the rest were mostly family members or caregivers of someone with the disease.

The subsequent analysis focused only on people with sarcoidosis. Among these patients, about three-quarters (73.36%) identified as female. The mean age was 59.4 years, based on 357 responses.

sarcoidosis survey | Sarcoidosis News | infographic from survey for sarcoidosis patients

Click above to view the full-size infographic.

In terms of race and ethnicity, 79.71% of respondents identified as white, 13.12% as Black/African American, and 3.07% as Latino/Hispanic. All other races and ethnicities collectively accounted for fewer than 5% of respondents.

Just under half (45.29%) of the patients had private health insurance. Another 38.11% had Medicare, and 6.56% had Medicaid. Only 2.25% of the patients said they didn’t have any health insurance.

Among the 476 patients who responded, the average time elapsed since their diagnosis was 11.1 years. There were 24 patients who reported having a blood relative with sarcoidosis.

By far the most common type of sarcoidosis was pulmonary sarcoidosis; 81.76% of the patients had been diagnosed with this form of the disease. The next most common types were cardiac (17.42%), cutaneous (17.21%), and musculoskeletal (16.19%) sarcoidosis.

Among the 399 patients with pulmonary sarcoidosis who specified their disease stage, most (31.83%) were in stage 2, meaning that they had granulomas — the abnormal clumps of immune cells that build up in organs and tissues — in their lungs and lymph nodes.

The most common sarcoidosis symptom, reported by nearly 3 in 4 patients, was fatigue (73.97%). Other common symptoms included shortness of breath (56.55%), pain and swelling in joints (55.32%), burning, itchy, or dry eyes (50%), and severe tiredness (45.28%). Fatigue was most commonly rated the most bothersome symptom, followed by shortness of breath, and pain and swelling in joints.

How were patients being treated?

The most common types of doctors seen to manage sarcoidosis included general practitioners (57.58%), pulmonologists (48.15%), ophthalmologists (27.86%), and rheumatologists (22.95%).

The average length of time patients had spent on their current treatment plan was about five years, according to 314 responses. Notably, more than two-thirds of these respondents had been on their current treatment for five years or less.

About two-thirds (68.04%) of patients were taking a medication to treat sarcoidosis, based on 485 responses. Of note, 84.77% out of 486 patients said they also were taking medications unrelated to sarcoidosis.

The most commonly used sarcoidosis treatments, based on responses from 330 patients, were prednisone (43.32%), methotrexate (20.29%), and the anti-malarial hydroxychloroquine (18.48%).

From 330 responses, the most frequently reported treatment side effects were fatigue (55.45%), dry eyes (28.18%), numbness or tingling in hands or feet (27.57%), pain (22.72%), and insomnia (22.42%). Fatigue, pain, and numbness also were cited as the side effects commonly considered most bothersome.

The majority of patients (64.18%; 310 out of 483 responses) said they had previously been taking a sarcoidosis treatment, but had since stopped. The most common medication that had been stopped was prednisone, often due to side effects or at the recommendation of the person’s doctor. Of note, prednisone often is used to manage disease flare-ups, so it’s typical to stop treatment once those symptoms resolve.

Side effects that patients remembered being bothered by on prior treatments included insomnia (33.54%), fatigue (22.25%), nausea (18.70%), agitation (17.41%), and anxiety (17.09%), based on responses from the 310 patients who had discontinued a medication.

Eight patients reported having undergone a lung transplant due to sarcoidosis, and heart, kidney, and skin transplants were reported by four patients each. Other organs transplanted due to sarcoidosis in this population included the liver, bones, spleen, pancreas, and lymph nodes.

Satisfaction with life and care

sarcoidosis survey | Sarcoidosis News | infographic from survey for sarcoidosis patientsThe majority of the 488 patients reported being satisfied with their quality of life: 43.03% were “somewhat satisfied,” while 15.37% were “extremely satisfied.” Nonetheless, nearly a third of patients were dissatisfied with their life quality; 20.29% were “somewhat dissatisfied” and 11.89% were “very dissatisfied.”

Similarly, based on 487 responses, 18.69% of patients were “very optimistic” about the future, and 33.68% were “somewhat optimistic.” However, more than one in four were pessimistic about the future: 22.79% were “somewhat pessimistic” and 5.13% “very pessimistic.”

Overall, a slim majority of patients were satisfied with their current treatment, though exact rates varied based on the specific medication. For example, among 149 patients on prednisone, 12% were “extremely satisfied” and 30.2% were “somewhat satisfied” with the medicine — but also, 13.4% were “extremely dissatisfied” and 17.4% “somewhat dissatisfied.”

Of 69 patients on methotrexate, 11.6% were “extremely satisfied” and 36.2% “somewhat satisfied,” while 7.2% were “somewhat dissatisfied” and 11.6% “extremely dissatisfied.”

In line with these satisfaction rates, most patients said they were not considering changing treatments, including more than 60% of patients on prednisone or methotrexate (based on 145 responses for prednisone and 62 for methotrexate). 

Of 111 patients who said they were considering changing treatments, the most common reasons given were side effects (36.94%) — most commonly fatigue — and concerns about effectiveness (27.93%).

More than three-quarters of patients said they were satisfied with their health insurance provider: 42.09% were “extremely satisfied,” and 34.62% “somewhat satisfied.” By contrast, only about one in 10 patients were unhappy with their insurance, with 8.33% responding “somewhat dissatisfied” and 2.99% “very dissatisfied.”

Most patients said that they were likely to participate in clinical trials testing experimental sarcoidosis therapies: 22.31% were “extremely likely” to participate and 36.16% were “somewhat likely,” according to 484 answers. Of the remainder, most (23.14%) were “neither likely nor unlikely,” while 6.82% were “somewhat unlikely” and 11.57% “extremely unlikely.”

Similarly, more than two-thirds (68.66%) out of 485 respondents said they were interested in learning about trial opportunities.

Collectively, the survey results highlight areas where patients’ needs are not being adequately met by current care.

“Development of medications/therapies that can address fatigue, shortness of breath, and pain and swelling in the joints (the most common complications reported) more effectively than prednisone does presently could benefit a large population of patients,” Harney said.