Severe disease uncommon at time of sarcoidosis diagnosis: Dutch study
But lungs affected in over 95% of patients diagnosed in Netherlands
The lungs are affected in nearly everyone diagnosed with sarcoidosis in the Netherlands, but most patients in the country don’t have disease severe enough to warrant systemic immune-suppressing treatments at the time of diagnosis.
That’s according to the findings of a new study, “Organ involvement in newly diagnosed sarcoidosis patients in the Netherlands: The first large European multicentre prospective study,” which was published in Respiratory Medicine.
As its title suggests, the study is believed to be among the first in the region to investigate the manifestations of sarcoidosis at the time of a patient’s diagnosis. The researchers noted that it’s “important to consider the influence of ethnicity and geographical area on … data” involving people with sarcoidosis.
“Sarcoidosis is a disorder with a wide variety of clinical manifestations, influenced by genetic, ethnic and geographical factors,” the team wrote. “Early identification of organ involvement in sarcoidosis may be useful to guide treatment decisions in clinical practice and subsequently may improve the quality of life and prognosis.”
Large study on organ involvement is 1st in Europe, per researchers
Sarcoidosis is an inflammatory disorder characterized by clumps of immune cells called granulomas, which can affect organs throughout the body. There have been previous studies on patterns of organ involvement among newly diagnosed sarcoidosis patients in North America and Japan, but there has not been much similar research in Europe.
Aiming to fill this knowledge gap, scientists at two large teaching hospitals in the Netherlands conducted a prospective study in which they recorded patterns of organ involvement for everyone diagnosed with sarcoidosis at their centers from 2015 to the start of 2020.
“Due to the unselected nature, the included population can be considered a real-life sarcoidosis population,” the scientists noted. They highlighted this as a strength compared with studies done at specialty centers, which tend to see more patients with severe disease.
A total of 330 patients were assessed. In most — 65% of patients — sarcoidosis affected one organ. Another 27% had two organs affected. Fewer than 1 in 10 patients had sarcoidosis affecting three or more different organs at once.
The most common disease manifestation was by far the lungs; nearly all patients (96%) had pulmonary sarcoidosis with some amount of lung involvement. However, while lung involvement was common, most patients did not have severe lung disease at diagnosis. Specifically, about one-third (38%) showed abnormalities in lung function tests, and 3% had signs of pulmonary fibrosis, or scarring in the lungs.
Disease manifestations outside of the lungs were identified in fewer than half (42%) of patients at the time of diagnosis.
Skin involvement seen to affect nearly one-quarter at sarcoidosis diagnosis
The most common non-lung manifestation was skin involvement, known as cutaneous sarcoidosis, which was seen in about one-quarter (23%) of the patients. The researchers noted that skin involvement affected a significantly higher percentage of female than male patients, and it was more common in patients diagnosed before age 40.
Other comparatively common non-lung manifestations included abnormalities in calcium processing and problems with the bone and/or bone marrow, both seen in 9% of patients, and eye inflammation or ocular sarcoidosis, seen in 12%. More rarely, some patients had other disease manifestations including involvement of the heart (cardiac sarcoidosis), nerves (neurosarcoidosis), kidney, liver, joints, and spleen.
Comparing these findings against previous data from a large study in North America, the researchers noted that patients in the Netherlands had similar rates of lung and eye involvement but higher rates of skin involvement and lower rates of liver or multiorgan involvement. This may be due to differences in demographics as well as other factors like access to reliable health insurance, the researchers noted.
Our study indicates that the prevalence of high-risk organ and multi-organ involvement is low among Northwest-European patients with newly diagnosed sarcoidosis.
Overall, the findings showed that rates of serious disease complications like pulmonary fibrosis or heart problems are uncommon at the time of diagnosis for sarcoidosis patients in the Netherlands. In line with the relative rarity of serious issues, about 30% of patients in this study — fewer than a third — were started on anti-inflammatory medications at the time of diagnosis, most commonly using corticosteroids like prednisone.
“Our study indicates that the prevalence of high-risk organ and multi-organ involvement is low among Northwest-European patients with newly diagnosed sarcoidosis,” the scientists concluded, adding that these findings “could support future guidelines relating to systematic baseline organ screening in newly diagnosed sarcoidosis.”
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