Chest
Volume 125, Issue 3, March 2004, Pages 997-1004
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Clinical Investigations
SARCOIDOSIS
Health-Related Quality of Life of Persons With Sarcoidosis

https://doi.org/10.1378/chest.125.3.997Get rights and content

Study objectives

To describe the health-related quality of life (HRQL) and mental health of persons with sarcoidosis, as well as to assess physician-patient agreement about the presence of sarcoidosis symptoms.

Design and setting

Cross-sectional study at three university medical center outpatient pulmonary clinics.

Patients

One hundred eleven outpatients with sarcoidosis seen between March and July 2002.

Measurements

The HRQL of sarcoidosis patients was measured using generic and respiratory disease-specific forms (ie, Medical Outcomes Study 36-item short form survey [SF-36] and the St. George respiratory questionnaire [SGRQ], respectively). Depression was assessed using the Center for Epidemiologic Studies depression scale, and stress was assessed with the perceived stress scale four-item questionnaire. The κ-statistic was calculated to compare physician-patient agreement in assessing sarcoidosis-related symptoms.

Results

Patients had moderate-to-severe reductions across all measured domains in perceived HRQL. Those patients who were prescribed oral corticosteroids had lower scores on both the SF-36 and the SGRQ than did those patients who were not. These differences were statistically significant and clinically important. The prevalence of depression was 66%, and that of significant stress was 55%. Spirometry values (FEV1, 82% predicted; FVC, 86% predicted) were associated neither with HRQL nor with patients' perceived sarcoidosis symptoms, although they were correlated (r = 0.43; p < 0.0001) with physicians' perceptions that patients were symptomatic. Physicians and patients had only fair agreement (κ-statistic range, 0.24 to 0.36 [by center]) in assessing perceived sarcoidosis symptoms.

Conclusions

Outpatients with sarcoidosis had global reductions in measured HRQL and mental health indexes, although patients receiving therapy with oral corticosteroids had significantly worse HRQL. Experienced physicians based their assessments of patients' sarcoidosis symptoms on measures that were not related to issues of importance to patients. HRQL measurement may provide a unique insight into the impact that sarcoidosis may have on a patient's life that is not captured in traditional physiologic measures.

Section snippets

Subjects

We recruited all consecutive outpatients with sarcoidosis presenting between March and July 2002 to one of three university medical center outpatient pulmonary clinics (ie, University of North Carolina at Chapel Hill, Medical University of South Carolina, and East Carolina University) for inclusion in this study. Patients were excluded from the study if they were < 18 years of age, were organ transplant recipients, had active cancer, were not fluent English speakers, or had cognitive or reading

Patients

A total of 120 patients were enrolled in the study, although we excluded data from 9 patients with incomplete questionnaires. Table 1 demonstrates that the median patient age was 45 years (age range, 22 to 73 years). Most patients were female (78%), African-American (80%), and high school graduates (66%). Nearly all patients had pulmonary involvement (94%), although 61% had additional extrapulmonary disease. The median number of organs involved was two (range, one to five organs). Participants

Discussion

In the largest US study to date that has been designed specifically to assess the HRQL of sarcoidosis patients, we found significant decrements in physical, emotional, social, and role functioning of stable outpatients compared to historical population control subjects, using validated generic, respiratory-specific, and mental health questionnaires that were as prominent as those reported among survivors of ARDS,30 patients with symptomatic AIDS,40 persons with end-stage renal disease,41 and

ACKNOWLEDGMENT

The authors thank Amelia Anderson, Julie Montenegro, Jeanie Mascarella, Cathey Kaelin, Tim Carey, Sue Tolleson-Rinehart, Donald Pathman, the University of North Carolina-Chapel Hill National Research Service Award clinical research group, and the patients who participated for their assistance with this study.

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    This study was supported by a Public Health Outcomes grant from the University of North Carolina at Chapel Hill School of Public Health.

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