Introduction: Patients with sarcoidosis receiving immunosuppression report multifaceted treatment toxicities and difficulty distinguishing disease activity from medication side effects. Despite this, the relationship between perceived medication toxicity and HRQoL, along with determinants of toxicity perception, are poorly understood.  

Objectives: To evaluate the association between perceived medication toxicity and HRQoL in pulmonary sarcoidosis and identify factors associated with toxicity perception.

Materials and Methods: Adults ≥ 18 years of age with biopsy proven sarcoidosis, pulmonary involvement, and prescribed oral treatment were recruited from the Johns Hopkins Sarcoidosis Clinic. Perceived medication toxicity was assessed using a patient-reported 1 to 100 scale, with higher scores indicating greater perceived toxicity. HRQoL was measured using the King’s Sarcoidosis Questionnaire (KSQ) General Health Status (GHS) and lung-specific domains. Multivariable linear regression evaluated the association between perceived toxicity and KSQ outcomes, adjusting for clinicodemographic characteristics. Factors associated with toxicity perception, including clinicodemographic characteristics, health literacy, and beliefs about medications were additionally explored.

Results: Of the 150 participants, 55% were female, 46% were Black, and mean age was 58 (SD 11) years. Higher perceived medication toxicity independently associated with worse KSQ GHS (β = −0.18, 95% CI −0.27 to −0.09) and lung scores (β = −0.23, 95% CI −0.33 to −0.13). Greater concerns about harms of medicines relative to their perceived necessity associated with higher toxicity scores (β = −1.31, 95% CI −2.18 to −0.44), as did female gender (β = 11.60, 95% CI 1.87 to 21.34). Patients on corticosteroid-sparing monotherapy reported lower toxicity scores (β = −23.50, 95% CI −36.49 to −10.50).

Conclusions: Our results show that perceived medication toxicity is associated with worse HRQoL and may relate to patient beliefs and treatment strategy. Interventions that align treatment strategies with patient beliefs and proactively address toxicity perceptions could represent a new paradigm for improving patient experiences in sarcoidosis.