Sarcoidosis: the Clinical Value of Patient Self-Assessments

Can clinicians better manage sarcoidoisis by gathering patient self-assessment data at baseline, rather than focusing solely on traditional clinical measures?

In sarcoidosis, the most accurate way of identifying outcomes of importance to patients may be the patient’s self-assessment, rather than traditional objective assessments of the disease. This was among findings of the On-line Sarcoidosis Assessment Platform Study (Clinical Trial Registration Number: NCT04342403), the results of which were recently published in Respiratory Medicine.

Sarcoidosis can impact quality of life by affecting patients’ health, function, social interaction, employment status, security, and emotional status. Although traditional measures are useful for determining physiologic and morbidity outcomes, the correlation between phenotypic measures and outcomes that are meaningful to patients have not been compared longitudinally. Researchers therefore conducted a clinical trial that prospectively examined the relationship of baseline measurements of sarcoidosis status to 15 outcomes of interest to patients (OIPs), including steps walked, calories expended, sleep, health-related quality of life (HRQoL) measures, workdays missed, and health care utilization longitudinally for 6 months. Notably, these IOPs differed from traditional physiologic outcomes, said the study authors.

At baseline, 332 sarcoidosis patients cared for at 6 medical centers were assessed using various measures considered to be indicative of phenotype, including pulmonary function, organ involvement, HRQoL instruments, and anti-sarcoidosis treatment history. Cutoff values were specified to determine which patients fit the phenotype for a given measure, thus providing investigators with a cohort of phenotypic participants that allowed investigators to evaluate the association between each phenotypic characteristic and IOP outcomes at 6 months. Participants also provided global assessments of their disease at baseline using a patient visual analog scale form (Patient-VAS). Study participants were then followed for 6 months via an online sarcoidosis assessment platform, through which monthly assessment data relating to the 15 preselected outcomes of interest to patients were gathered. Patient data on daily step counts, caloric expenditure, and sleep were gathered via FitBit.

The researchers found that the patients’ global assessment of their disease at baseline via Patient-VAS was the most accurate predictor of their achievement of the 15 selected OIPs at 6 months, with the Patient-VAS was associated with 13 of the 15 OIPs at the 6-month assessment. Other baseline measures associated with a large number of OIPs included the modified extrapulmonary organ assessment tool (9/15 OIPs), the 6-minute walk distance test (10/15 OIPs), all HRQoL measures, and yearly prednisone dose. In contrast, traditional measures of sarcoidosis disease activity (Scadding stage, spirometry, and other physiological measures) had a much lesser association with the OIPs.

Overall, the study data suggest that among patients with sarcoidosis, the “patient’s perception of their health was more closely associated with their future well-being than several traditional measure of sarcoidosis disease activity,” study authors noted.

“These results suggest that a sarcoidosis treatment approach aimed at improving physiology and lessening the anatomic extent of disease without regard to the patient’s symptoms or functional status may be deficient,” said the authors. They concluded that “these data highlight the importance of a sarcoidosis management approach that incorporates shared physician-patient decision making.”

Disclosure: Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures. 


Judson MA, Yucel R, Preston S, et al. The association of baseline sarcoidosis measurements with 6-month outcomes that are of interest to patients: Results from the On-line Sarcoidosis Assessment Platform Study (OSAP). Respir Med. Published online March 9, 2022. doi:10.1016/j.rmed.2022.106819