Patients under treatment for sarcoidosis reported adherence issues and would welcome personalized pharmaceutical care: Results from survey online

Available online 14 May 2025

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Sarcoidosis is an immune-inflammatory condition marked by significant health disparities. Around 50% of individuals diagnosed with sarcoidosis need long-term or even lifelong treatment to halt the progression of the disease. Recent guidelines, primarily targeting pulmonary sarcoidosis, have been proposed. Despite this, reports on medication adherence in sarcoidosis are scarce, and pharmaceutical care is rarely incorporated into patient-centered treatment strategies. In our study, we conducted a survey through social media (n = 157) and discovered that 79% of participants were either slightly or not at all adherent to their medication regimen, according to the Girerd score. The primary goal of this project is to pinpoint the factors influencing non-adherence among sarcoidosis patients. We identified that treatment involving corticosteroids or corticosteroid-sparing drugs, coupled with factors like age and pulmonary localization, are linked to poorer adherence outcomes. Moreover, patients demonstrating poor adherence showed a readiness to engage in personalized pharmaceutical care.

Section snippetsAbbreviationsAUC

area under curve

AZA

azathioprine

CI

confidence interval

MARS

medication adherence reporting scale

MMAS

Morisky medication adherence scale

MPR

medication possession ratio

MTX

methotrexate

OR

odd ratio

PDC

percentage of treatment days covered

TNF

tumor necrosis factor

Methods

We conducted an online survey with sarcoidosis patients who were members of a patient group on a social network (Facebook) from March 4th, 2020, to December 3rd, 2020. The survey included questions about demographics, therapeutic adherence, and interest in pharmaceutical care (Supplemental 1). Adherence was assessed using the Girerd® score, a validated self-administered questionnaire designed to estimate adherence levels [15]. This score comprises 6 yes/no questions, with “Yes” scoring 1 point

Results

In our study, we obtained 176 responses. The demographics of the population are presented in Table 1.

Briefly, 135 (76.7%) were female and the average age of disease onset in this group was 38.4 ± 0.8 years old (Table 1). Seventy-nine (79) patients had single organ involvement and 97 had multiple organ involvement. The most frequent complications, were pulmonary (140; 79.6%), mediastinal lymph nodes (44; 25.0%), ocular (31; 17.6%), and skin (33; 18.8%) either individually or in association.

Discussion

Our study highlighted a high level of non-adherence in sarcoidosis patients with 76.4% of patients reporting non-optimal adherence. Sharp et al reported comparable results and 66% of individuals reporting at least one non-adherent behavior in a cohort of 117 patients with pulmonary sarcoidosis [14]. Interestingly, in our cohort, pulmonary sarcoidosis emerged as an independent predictor of poorer adherence. In addition, corticotherapy was the most predictive factor to poor adherence and this is

Conclusion

This study highlights the clinical profiles, treatment patterns, and medication adherence behaviors among patients with sarcoidosis. The cohort was predominantly female, with frequent pulmonary and multi-organ involvement. Over 80% of patients received corticosteroids, often in combination with steroid-sparing agents. A substantial proportion of patients reported suboptimal adherence, with corticosteroid and MTX/AZA treatments emerging as significant determinants of poor adherence. Younger age

Funding

This study did not require funding.

Disclosure of interest

The authors declare that they have no competing interest.

Acknowledgement

We gratefully thank Alan Bruce for English editing.

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