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(Chest. 2004;125:997-1004.)
© 2004 American College of Chest Physicians

Health-Related Quality of Life of Persons With Sarcoidosis*

Christopher E. Cox, MD, MPH; James F. Donohue, MD, FCCP; Cynthia D. Brown, MD; Yash P. Kataria, MD, FCCP and Marc A. Judson, MD, FCCP

* From the Department of Medicine (Drs. Cox and Donohue), Division of Pulmonary and Critical Care Medicine, University of North Carolina, Chapel Hill, NC; the Department of Medicine (Drs. Brown and Kataria), Division of Pulmonary and Critical Care Medicine, East Carolina University, Greenville, NC; and the Department of Medicine (Dr. Judson), Division of Pulmonary and Critical Care Medicine, Medical University of South Carolina, Charleston, SC.

Correspondence to: Christopher E. Cox, MD, MPH, Duke University Medical Center, Division of Pulmonary and Critical Care Medicine, Box 3221, Durham, NC 27710; e-mail: christopher.cox{at}duke.edu phone


   Abstract
TOP
 Abstract
Introduction
 Materials and Methods
 Results
 Discussion
 References
 
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 {kappa}-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 ({kappa}-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.

Key Words: health status indicators • quality of life • questionnaires • sarcoidosis


   Introduction
TOP
 Abstract
 Introduction
Materials and Methods
 Results
 Discussion
 References
 
Sarcoidosis is an inflammatory granulomatous disease that is characterized by diverse organ system manifestations, a variable clinical course, and a predilection for affecting relatively young adults worldwide.1 Most persons with sarcoidosis have spontaneous remission of their disease, although between 10% and 30% may experience chronic or progressive disease2 that can affect physical functioning1 and mental well-being.3 4 Although sarcoidosis was described nearly a century ago, there are still no validated measures of disease activity or severity, no reliable predictors of disease progression, and no therapy that definitively alters long-term outcomes such as progression to pulmonary fibrosis.5

Past studies6 7 8 of sarcoidosis patients have evaluated outcomes primarily by focusing on pulmonary manifestations of the disease, as measured by chest radiograph appearance, spirometry values, and gas exchange. However, these clinical variables are not strongly associated with long-term outcomes,7 9 10 do not take into consideration individual responses to physiologic impairment,11 and fail to incorporate other body systems that may have severe dysfunction and therefore may affect patients’ satisfaction with life. More importantly, these clinical measures have been found to correlate poorly with the way that patients with other chronic pulmonary diseases perceive their quality of life.12 13

An outcome that is especially relevant to patients with a potentially chronic disease like sarcoidosis is satisfaction with life as it is affected directly and indirectly by health and disease, or health-related quality of life (HRQL).14 Patient-centered outcomes measurements such as HRQL are useful because they allow clinicians, who often do not predict patients’ perceived HRQL accurately,15 to better understand the unique effect that similar states of health and disease may have on an individual’s perceived well-being11 in domains such as physical, mental, social, and role functioning. This information can be valuable as clinicians counsel patients, initiate and monitor therapy, or assess overall disease severity.

Researchers in Europe have reported3 16 17 18 that the HRQL of sarcoidosis patients is significantly diminished. In contrast, only 10 US sarcoidosis patients have had such measurements reported,19 although one study4 of 150 patients found high rates of depression. However, no study has been designed specifically to examine the HRQL of US sarcoidosis patients, who have different racial and cultural backgrounds than those of European patients20 and therefore may experience both a more severe disease course21 as well as unique health-care disparities that could further compromise their quality of life.22

Therefore, we conducted a cross-sectional study with the primary aim of evaluating the health outcomes of persons with sarcoidosis, including HRQL and mental functioning. Our secondary aim was to determine how well physicians and patients agreed on the presence and importance of patients’ symptoms perceived due to sarcoidosis.


   Materials and Methods
TOP
 Abstract
 Introduction
 Materials and Methods
Results
 Discussion
 References
 
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 deficits that prevented completion of the questionnaire. All patients had biopsy-proven sarcoidosis.1 One hundred fifty eligible patients were approached for inclusion in the study, and 120 patients participated after providing informed written consent. Reasons for refusal of inclusion in the study included lack of time to complete the study questionnaires, disinterest in the study, and an unwillingness to complete spirometry testing.

Study Design
We used a cross-sectional design to assess the baseline HRQL of persons with sarcoidosis. This study was part of a larger project consisting of two separate cross-sectional studies in which we developed and validated a sarcoidosis-specific HRQL questionnaire.23 Although the participants in this current study were involved in the validation of the new questionnaire, the results we report here have not been published elsewhere.

Either a trained research nurse or a main study investigator enrolled patients at the time of their regularly scheduled clinic visit. Without assistance from any staff member, patients completed a battery of quality-of-life and mental health questionnaires, a short questionnaire addressing social and demographic factors, and the Medical Research Council dyspnea scale.24 The Medical Research Council scale ranks breathlessness from 0 (no dyspnea) to 5 (severe dyspnea) and has been validated for use among persons with a variety of pulmonary conditions.24 Patients were also asked to rate their values for their current health state on a scale of 0 (death) to 1 (perfect health). After the clinic visit, patients performed spirometry, including measurement of the FEV1 and the FVC, which we have reported as a percentage of predicted values adjusted for age, gender, ethnicity, and height.25 Spirometry testing was performed according to American Thoracic Society specifications26 and per the usual protocol of the referring center. All patients performed spirometry within 2 weeks of the clinic visit. Most (90%) did so on the same day as the clinic appointment.

Quality-of-Life and Mental Health Questionnaires
The Medical Outcomes Study 36-Item Short Form Survey:
The Medical Outcomes Study 36-item short form survey (SF-36) is a generic HRQL instrument with evidence of reliability and validity for use among persons with a variety of conditions, including COPD27 and sarcoidosis.19 Scores for the eight domains of the SF-36 are transformed to a 100-point scale, with higher scores indicating better HRQL.28 For the SF-36, domain scores can be summed into a composite mental component score (MCS) and a physical component score (PCS), both of which are standardized to a mean score of 50 among healthy persons. SF-36 scores for healthy control subjects from the US population that were used in comparative analyses were derived from a sample of 193 persons aged 45 to 54 years from a larger, racially diverse, nationwide, cross-sectional study of 2,474 persons without chronic disease.29

The St. George Respiratory Questionnaire:
The St. George respiratory questionnaire (SGRQ) is a 76-item questionnaire that has been validated among patients with a variety of pulmonary conditions12 19 30 with three domains (symptoms, activity, and impact) and that measures the effect of pulmonary disease on a person’s functioning and satisfaction with life.12 In addition to a summary total score, each domain of the SGRQ is scored on a 100-point scale with lower scores indicating better quality of life, which is the opposite of the SF-36. We derived normal SGRQ values from a historical control group of healthy persons aged 17 to 80 years without pulmonary disease.31

The Center for Epidemiologic Studies-Depression Questionnaire:
The Center for Epidemiologic Studies-depression questionnaire (CES-D) [the 11-item version] is an instrument that has been validated for use in general populations32 and has been used in a previous cohort study of sarcoidosis.4 Following the work of others,4 we have used a cutoff score of >= 9 to indicate depression.

The Perceived Stress Scale:
The perceived stress scale (PSS) is a four-item form that has been used in a variety of populations as a general measure of stress.33 A score of >= 8 was used to define significant stress.

Physician Questionnaire:
At the time of the clinic visit, each patient’s regular physician completed a questionnaire that included assessments of whether the patient was currently symptomatic from sarcoidosis, of whether common medical comorbidities were present, as well as of the current extent of sarcoidosis organ involvement using the ACCESS (A Case-Control Epidemiologic Study of Sarcoidosis) organ involvement index.34 The ACCESS form was developed by clinician members of this National Heart, Lung, and Blood Institute-sponsored multicenter sarcoidosis study35 and can be used to document the involvement of sarcoidosis ("definite," "probable," or "possible") in any of 15 organ systems. We classified positive organ involvement with sarcoidosis if the examining physician reported definite or probable involvement based on physical examination findings, laboratory test results, or radiologic imaging findings. Most patients (ie, > 90%) were seen by the study authors (MJ, CB, YK, and JD), who together averaged 18 years of experience each in treating sarcoidosis patients. These physicians were the patients’ regular physicians. No patients were recruited who were not established patients.

Statistical Analysis
We used two-sample t tests for variables with two categories and one-way analysis of variance tests for variables with more than two categories to compare differences in quality-of-life scores by the clinical characteristics of patients. Testing also was performed using the Wilcoxon rank sum and Kruskal-Wallis tests, although the results were similar to those obtained from parametric methods. The Pearson {chi}2 test or Fisher exact test was used to determine differences between dichotomous variables. We used correlations calculated by either the Pearson or Spearman methods to evaluate baseline variables with strong relationships for evidence of collinearity. Multiple linear regression modeling was performed to test for associations between adjusted independent variables of interest and SF-36 and SGRQ scores, while likelihood ratio testing was used to simplify the model. Correction for intraclass correlation related to potential test center effect was performed by variance estimate adjustment in the linear regression model.36 Agreement between physicians and patients regarding patients’ presence of symptomatic disease was assessed using the Pearson {chi}2 test and the {kappa}-statistic,37 which measures chance-corrected agreement. We interpreted a p value of < 0.05 as indicating statistical significance. We used two statistical software packages (Stata, version 7; StataCorp; College Station, TX; and SPSS, version 10.0; SPSS; Chicago, IL) in our analyses. The institutional review boards of the University of North Carolina at Chapel Hill, the Medical University of South Carolina, and East Carolina University approved the study protocol.


   Results
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
Discussion
 References
 
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 had median FEV1 and FVC values that exceeded 80% predicted, although the median dyspnea score was 2 (dyspnea score range, 1 to 5), signifying at least a moderate degree of breathlessness in daily activities. Overall, 58% of patients rated their health as fair or poor, and 51% reported that they had experienced significant symptoms attributable to sarcoidosis at least a good bit of the time during the preceding 2 weeks.


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  		Table 1. Characteristics of Participants*

 
Questionnaire Scores
Both generic and respiratory-specific questionnaire scores reflected patients’ poor HRQL across multiple domains (Table 2 ). Patients had decrements in all domains of the SF-36 compared to historical healthy persons, the most significant being in physical functioning, vitality, and role limitations related to both physical and emotional problems. The mean SF-36-PCS and SF-36-MCS scores were 34 (SD, 12) and 45 (SD, 12), respectively, reflecting patients’ slightly greater perceived decrement in physical ability relative to mental ability. Scores on the SGRQ reflected the significant impact of patients’ respiratory symptoms on their quality of life, with a total score of 44 (SD, 23). The activity domain demonstrated the greatest deficit in HRQL, with a mean score of 59 (SD, 28), while the impact domain showed the smallest deficit (mean score, 34; SD, 25). Sarcoidosis patients’ SF-36 and SGRQ scores were significantly worse than healthy historical control subjects across all domains (p < 0.001). Although there were no differences in SF-36-MCS or SF-36-PCS scores between patients with solitary thoracic involvement vs those with extrathoracic involvement (both p > 0.1), there was a trend toward higher mean total SGRQ scores among those with additional extrapulmonary disease (p = 0.045). Furthermore, there were no differences in SF-36-MCS, SF-36-PCS, SGRQ total, and CES-D scores between African-American patients and those of other ethnicities (all p > 0.5). Persons with less than a high school education or those who were unemployed were significantly lower on the SF-36 (p < 0.01). The median scores on the CES-D and the PSS were 11 and 7, respectively, and the rates of depression and significant stress were 66% and 55%, respectively.


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  		Table 2. Questionnaire Results of Study Participants*

 
We were interested specifically in whether differences existed in HRQL scores between those receiving oral corticosteroids and those who were not (Table 3 ). Using an analysis of covariance strategy based on linear regression modeling, we found that there were statistically significant differences between groups using both the SF-36-PCS scores (mean, 31 and 37, respectively; p = 0.011) and SGRQ total scores (mean, 52 and 37, respectively; p < 0.001). These differences remained statistically significant after adjustment for other relevant variables with independent associations with these scores and simplification of the model (Table 3) . Additionally, these differences in SGRQ and SF-36 scores also reflected clinically important differences in HRQL.29 38 We found no differences in SF-36-MCS scores (p = 0.055), depression (p = 0.19), or PSS scores (p = 0.10) between groups receiving steroids and those not receiving steroids using t tests.


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  		Table 3. Differences in Predicted HRQL Scores Between Patient Groups Based on Oral Corticosteroid Treatment*

 
We also examined squared correlations (r2) to understand the amount of variance, or "true score," of HRQL values that was explained by clinical variables (Table 4 ). Spirometry findings and total sarcoidosis organ burden were not related to either the SF-36 or SGRQ total scores (p > 0.05), although depression, stress, and patients’ perceived sarcoidosis symptoms were highly correlated with both questionnaires. Interestingly, although physicians’ assessments of patients’ symptoms were associated with spirometry results and corticosteroid use, they were not related to either HRQL scores or patients’ own perceptions of symptoms. Gender, age, ethnicity, and smoking status were not significantly related to SF-36 or SGRQ total scores (p > 0.05).


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  		Table 4. Squared Correlations (r2) Between HRQL Questionnaire Scores and Other Variables*

 
Symptoms Assessment Agreement
Physicians and patients had a 65% raw agreement (74 of 111 assessments) regarding the presence of symptoms related to sarcoidosis. Agreement was similar when patient groups were stratified by solitary pulmonary involvement (72% agreement) and additional extrapulmonary involvement (66% agreement). However, there was a significant difference overall in the percentage of patients who perceived themselves to be symptomatic (50%) and the percentage of patients who physicians perceived to be symptomatic (61%) using Pearson {chi}2 tests (p < 0.001). We found that {kappa}-statistic values, representing the ratio of actual and potential agreement beyond chance among the three main study clinicians (MJ, JD, and CB) and patients in rating whether or not the patient was symptomatic from sarcoidosis, were 0.36 (p = 0.04), 0.24 (p = 0.02), and 0.26 (p = 0.17), respectively, at the three sites. These {kappa}-statistic values represented only fair agreement between physician and patient agreement in assessing perceived symptoms.39


   Discussion
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
References
 
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 persons with moderate-to-severe COPD.31 We also found that that there is a clinically important as well as statistically significant difference in perceived HRQL between those patients treated with oral corticosteroids and those not treated with them, after adjustment for potential confounding variables. Furthermore, physicians and patients had only fair agreement about the presence and importance of symptoms attributable to sarcoidosis.

Our findings complement those from the few studies that have examined the HRQL of sarcoidosis patients. The SF-36 and SGRQ results are similar to those gathered from a group of 50 patients with interstitial lung disease, which included 10 patients with sarcoidosis,19 and their correlation with patients’ perceived health status, dyspnea measures, as well as depression. Stress scales provide further support for the validity of these questionnaires for use within this population. However, it is not clear whether these questionnaires are adequately sensitive to the multisystem problems that sarcoidosis patients may have,23 as reflected by the low correlations between HRQL scores and the extent of organ system involvement. However, a recently developed HRQL questionnaire23 with evidence of validity and reliability that incorporates items of importance to persons with sarcoidosis—the Sarcoidosis Health Questionnaire—was able to determine differences in HRQL based on organ burden.

The mental and emotional health concerns of stable sarcoidosis outpatients appeared to be as important as physical complaints to patients’ perceived well-being. Although we observed a prevalence of depressive symptoms (66%) that was nearly identical to that reported by Chang and coworkers4 (60%) using the CES-D, Drent et al3 found a much lower prevalence of depression (18%) among Dutch patients using the Beck depression inventory. However, the clinical differences between the US and Dutch sarcoidosis populations, including access to health care and the different questionnaires used to assess HRQL, make these results difficult to compare.42 Also, the levels of significant stress that participants reported is cause for concern, especially in light of evidence linking stress with a variety of physiologic, mental, and social problems.43 Overall, nearly 60% of patients perceived their condition to be "serious" in nature, perhaps contributing to their symptoms of depression and stress.

The reasons that patients with sarcoidosis report such poor HRQL and significant mental health symptoms are likely multiple. First, patients must endure an unpredictable multisystemic disease characterized by exacerbations and remissions that has no effective therapy that is free of significant side effects.2 Patients may have multiple complaints of fatigue, body pain, and low energy that can be difficult to assess and frustrating to manage by examining physicians.18 As a result, these symptoms may be ineffectively addressed and treated, adversely affecting HRQL. The majority of sarcoidosis patients in our study were African-American, a group with lower average income,44 lower perceived access to quality health care,45 and lower satisfaction with health care,46 in comparison with whites—all factors that are associated with worse health outcomes, than white sarcoidosis patients in the United States.22 Although we found no differences in HRQL by ethnicity, our comparisons were limited by the predominance of a single ethnic group enrolled in the study.

It is worth noting that physicians with decades of experience treating persons with sarcoidosis had relatively poor chance-corrected agreement with patients in assessing the presence of sarcoidosis symptoms. Furthermore, there were only weak correlations between physician’s assessments of symptoms and patients’ HRQL scores, yet strong associations with spirometry and the prescription of corticosteroids. Although our findings may reflect patients’ misinterpretations of their symptoms as being related to sarcoidosis, it is also possible that physicians may not recognize the importance to patients of problems related to sarcoidosis, including depression,4 musculoskeletal pain,47 stress,48 and fatigue,47 that may not commonly be addressed in a clinical setting. Physicians also may place more weight on the results of pulmonary laboratory tests such as chest radiographs and pulmonary function testing than on pulmonary symptoms of dyspnea, cough, wheeze, and chest pain. However, spirometry values correlated only weakly with measures of HRQL, which is similar to findings from patients with both COPD49 and sarcoidosis.18 23 This highlights the fact that spirometry testing is a poor measure of patients’ perceived well-being. Could the correlation between corticosteroid use and physicians’ perceptions of symptoms simply reflect their awareness of a treatment plan that has been enacted to address patients’ symptoms? Clearly, this is a possible interpretation of our results, although it does not explain why physicians’ assessments were so poorly correlated with patients’ symptoms and HRQL, yet were highly associated with spirometry results.

Limitations of our study include its cross-sectional design, which precluded the measurement of changes in HRQL over time as well as the characterization of the cumulative effect of oral corticosteroids on health outcomes. Because of the controversial effect of oral corticosteroids on long-term outcomes of sarcoidosis,8 50 such as progression to pulmonary fibrosis, our finding that corticosteroid use was associated with worse HRQL scores will be important to examine in future prospective studies. Although we did not record the pulmonary staging of patients using the method of Scadding,51 we did not believe that chest radiograph appearance would contribute significantly to explaining a large amount of variance in HRQL scores in light of the poor correlations found in the past between spirometry and HRQL. Readers should also be aware that we compared patients’ HRQL scores to unmatched historical control subjects. Because of the dramatic differences in scores, however, we doubt that the use of a matched population would account for the global decrements in HRQL that we observed among sarcoidosis patients. Although the fact that 61% of our subjects had extrathoracic sarcoidosis may seem excessive, it was probably to be expected for several reasons. First, our patients were predominantly African-American, and such patients have a high frequency of extrapulmonary sarcoidosis relative to white patients.35 The ACCESS study34 of sarcoidosis, which was performed at 10 major sarcoidosis centers across the United States, found that, although 50% of patients had extrathoracic disease, only 44% of these patients were African-American. Also, this is only the second study to use the ACCESS study instrument34 to quantify disease burden. It seems likely that the use of a template such as this to guide a clinician systematically in assessing the number of organ systems involved would result in greater quantified disease burden by virtue of some degree of prompting, although this was not formally evaluated. A final consideration is that the patients who participated in the study may have had more extensive or complicated disease than those seen elsewhere because of a tertiary care center referral bias. However, > 30% of our patients had only one organ system involved, while the majority also had normal spirometry results, suggesting that we were sampling relatively stable patients who may be similar to those seen by community-based physicians. Nonetheless, because of the significant heterogeneity that is possible among persons with sarcoidosis, we caution clinicians and researchers against assuming that our findings are easily generalizable to all populations.

In conclusion, we found that the HRQL of stable outpatients with sarcoidosis was globally diminished, while this deficit was accentuated among those receiving oral corticosteroids. Additionally, the prevalence of both depression and significant stress was high. Physicians’ perceptions of patients’ symptoms correlated better with spirometry values than with either patients’ perceived symptoms or HRQL. We believe that these results suggest that there is a need for further interventions designed to improve the health outcomes of persons with sarcoidosis as well as to facilitate communication between physicians and their patients with sarcoidosis.52 The use of HRQL and mental health questionnaires in the clinical setting may allow clinicians to better understand the diverse ways that sarcoidosis affects patients’ lives.23


   Acknowledgements
 
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.


   Footnotes
 
Abbreviations: ACCESS = A Case-Control Etiologic Study of Sarcoidosis; CES-D = Center for Epidemiologic Studies depression scale; HRQL = health-related quality of life; MCS = mental component score; PCS = physical component score; PSS = perceived stress scale; SF-36 = Medical Outcomes Study 36-item short form questionnaire; SGRQ = St. George respiratory questionnaire

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

Received for publication June 10, 2003. Accepted for publication October 16, 2003.


   References
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 

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