Employment and Disability Issues in Systemic Lupus Erythematosus: A Review

Issues of Employment and Disability in SLE

SCOFIELD et al

Arthritis & Rheumatism (Arthritis Care & Research)
Vol. 59, No. 10, October 15, 2008, pp 1475–1479
DOI 10.1002/art.24113
© 2008, American College of Rheumatology
SPECIAL ARTICLE: DISABILITY AND REHABILITATION IN THE RHEUMATIC DISEASES

Employment and Disability Issues in Systemic Lupus
Erythematosus: A Review
LACIE SCOFIELD,1 LESLIE REINLIB,2 GRACIELA S. ALARCÓN,3 AND
GLINDA S. COOPER4
Objective. To summarize research pertaining to work disability in lupus patients,
discuss challenges patients face applying for federal disability assistance in the US,
and make recommendations for clinical and health policy research.
Methods. We searched Medline for articles on work or disability in lupus patients and
gathered information from the Social Security Administration and the National
Organization of Social Security Claimants’ Representatives.
Results. We found 12 publications with employment-related data; 6 included analysis of
predictors of work status. The prevalence of inability to work or cessation of work was
15–51% in these studies (3–15 years after diagnosis); 20–32% of patients received
disability benefits. Lower education level, higher disease activity, higher disease
damage, older age, and higher physical job strain were independent predictors of work
disability or work cessation in at least 2 studies. Lupus patients may be less successful
than patients with other diseases when applying for federal disability assistance,
possibly because medical records may not accurately reflect functional limitations. In
addition, symptoms contributing to work disability (e.g., fatigue, pain, neurocognitive
dysfunction) may be difficult to assess and quantify.
Conclusion. Work disability in lupus patients is common. Additional research on risk
factors for work disability in lupus patients and on strategies for reducing the impact of
these factors on work-related activities is needed. The development of better measures
and rating scales for the symptoms responsible for work disability in lupus patients and
studies of factors influencing the success of obtaining federal disability benefits would
also be useful.

The views expressed are those of the authors and do not necessarily reflect the views or policies of the
US Environmental Protection Agency, Department of Health and Human Services, or National Institute of
Environmental Health Sciences. Supported by the US Department of Health and Human Services Office on
Women’s Health, the National Institute of Environmental Health Sciences, and the Lupus Foundation of
America.
1Lacie Scofield, MSPH: National Institute of Environmental Health Sciences, Research Triangle Park,
North Carolina, and US Department of Health and Human Services Office on Women’s Health, Washington, DC;
2Leslie Reinlib, PhD: National Institute of Environmental Health Sciences, Research Triangle Park, North
Carolina; 3Graciela S. Alarcón, MD, MPH: University of Alabama at Birmingham; 4Glinda S. Cooper, PhD:
National Institute of Environmental Health Sciences, Research Triangle Park, North Carolina, and National
Center for Environmental Assessment, US Environmental Protection Agency, Washington, DC.
Address correspondence to Glinda S. Cooper, PhD, National Center for Environmental Assessment
(8601-P), US Environmental Protection Agency, 1200 Pennsylvania Avenue NW, Washington, DC 20460. E-mail:
cooper.glinda@epa.gov.
Submitted for publication November 20, 2007; accepted in revised form June 30, 2008.

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INTRODUCTION
Systemic lupus erythematosus (SLE) is a chronic autoimmune rheumatic disease with a significant burden on the
individuals affected and their family members. Either as a consequence of the disease or of the treatments used
for it, irreversible damage involving neuropsychiatric, renal, cardiovascular, and many other systems can occur
(1). Although a clear improvement in the survival of SLE patients has been seen during the past 50 years (2),
patients often experience long-term morbidity that can adversely affect their quality of life and ability to work,
resulting in substantial direct and indirect costs to the individual and society (3). We review relevant research
pertaining to measures of the prevalence and predictors of work disability or work cessation in lupus patients,
drawing on studies from Europe and North America. We also review the federal disability assistance programs in
the US as they pertain to lupus, highlight current data gaps, and discuss recommendations for future clinical and
health policy research.

MATERIALS AND METHODS
We searched the Medline database (last accessed July 2007) using the following search parameters: 1) lupus
and disability, 2) lupus and work, 3) lupus and employment, and 4) lupus and Social Security. References within
relevant reports were also reviewed. Additionally, we reviewed Web sites and personally contacted the US Social
Security Administration (SSA), the National Organization of Social Security Claimants’ Representatives, and
several individual attorneys who represent lupus patients seeking Social Security disability benefits.

RESULTS

Work disability. The available studies from Europe and the US pertaining to work status and disability in
SLE patients (4–15) range in size from 15 (9) to over 4,000 patients (12), with estimates of unemployment or work
disability ranging from approximately 15% to 51% an average of 3–15 years after diagnosis (Table 1). In a
survival analysis of employment status, Yelin et al (15) reported that 15%, 36%, 51%, and 63% of patients
stopped working after 5, 10, 15, and 20 years of disease duration, respectively. Prevalence of job loss for all
reasons may be somewhat higher than the estimates based on changes in job status because of lupus or ill
health. In 2 small studies, 20% (9) and 32% (13) of patients specifically reported that they were receiving disability
benefits. In both studies, the majority of patients who self-reported work disability were also receiving formal
benefits. Disability or work status has been associated with demographic factors, including lower levels of
education (10–12,15) and older age (14,15), higher physical job demands (10,15), disease activity (10,11,14) and
disease damage (13,14), and clinical features including neurologic symptoms, fatigue, and joint symptoms
(4,5,13).

Federal disability assistance. The degree of disability related assistance for patients with SLE depends
on the programs available in a state or country. Through the Social Security Act, the US Federal Government
offers 2 important assistance programs: the Social Security Disability Insurance (SSDI) program and the
Supplemental Security Income (SSI) program. The SSDI program is available to individuals who have worked and
paid Social Security taxes for a certain number of years, depending on their age (16). The SSI program is
available to individuals who have limited income and resources and who are disabled, regardless of whether they
have worked in the past (17). Both programs use eligibility criteria based on diagnosis and severity of impairment.
For a claim to be considered, the condition must be medically determinable by acceptable clinical and laboratory
diagnostic techniques and have symptoms so severe that any type of substantial gainful work activity is not
possible for at least 12 months.
The SSA publishes a Blue Book of medical conditions and guidelines for determining when each
condition is severe enough to automatically qualify a person as disabled (18). The Blue Book guidelines for lupus
patients are complex and can be found online at http://www.ssa.gov/disability/professionals/bluebook/14.00-
Immune-Adult.htm. For a lupus patient to qualify as disabled, he or she must have severe involvement of at least
1 of 11 organs/body systems (joints, muscular, ocular, respiratory, cardiovascular, digestive, renal, hematologic,
skin, neurologic, and mental) as defined by specific criteria. Alternatively, the patient may have lesser involvement
of 2 or more systems if at least 1 of the systems is involved at a moderate level of severity and the patient has
significant symptoms and signs of severe fatigue, fever, malaise, and weight loss. Supporting documentation for
the Blue Book criteria may include medical history, physical examination, selected laboratory studies, appropriate
medically acceptable imaging, and in some instances, tissue biopsy samples.

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Table 1. Studies reporting prevalence of work-related data or analysis of predictors of work status in lupus patients
Age, years; disease
Independent predictors of
Absenteeism and job change
Author (ref.), country
duration, years; ethnicity*
No., analysis group
Employment status
employment status†
data in working patients
No analysis of predictors of
Median 44; disease duration
54 patients younger than
20% not employed during 1982
Not analyzed
Median 20 days annual
employment status Sturfelt and
not reported
retirement age
(same as population
absences (3 days in population
Nived (4), Sweden
omparison rates), including
comparison), 19% missed > 90
13% drawing early retirement
days
Stein et al (5), Canada‡
Mean ± SD 36 ± 12; mean ±
102 patients with any
16% retired due to lupus
Not analyzed
17% changed jobs
SD 6 ± 5; 26% Native Indian,
employment history
Chinese, or Japanese
Clarke et al (6), Canada, UK,
Mean ± SD 41 ± 13; mean± SD 648 female patients
30% not working due to
Not analyzed
Not analyzed
US
10 ± 7; 76% white
morbidity
Sutcliffe et al (7), UK§
Mean ± SD 40 ±12; mean ± SD 105 consecutive patients
22% not working due to lupus,
Not analyzed
Mean ± SD 8 ± 21 days
11 ± 7; 75% white
including 10% retired due to
(median 3) absent among all
lupus
who worked
Boomsma et al (8), The
Mean 44; median 10; 94%
Not defined, patients employed 23% resigned due to lupus
Not analyzed
Since diagnosis, 61% absent
Netherlands
white
for ?1 year
for 6 consecutive weeks,
nearly 50% changed duties,
56% reduced hours
Poole et al (9), US
Mean ± SD in patients 43 ± 12;
15 female patients from a
27% unemployed, including
Not analyzed
Not analyzed
mean ± SD 8 ± 5
study of spectroscopic
20% receiving disability (7%
imaging, 15 healthy female
and 0% in controls,
controls
respectively)
Includes analysis of predictors
Mean ± SD 35 ± 10; mean 3;
152 patients ever employed
40% not working due to lupus
Lower education level, higher
Since diagnosis, 27% absent
of employment status Partridge
53% African American, 47%
since diagnosis (excluding 7
physical job demands, higher
for 2 consecutive months, 53%
et al (10), US
white
who chose not to work for
disease activity
changed duties, 49% reduced
reasons other than lupus)
hours
Sutcliffe et al (11), UK¶
Median 39; median 9; 77%
184 female patients
30% not working due to lupus
Lower education level, higher
Not analyzed
white, 12% African Caribbean,
disease activity (Birmingham)
10% Asian
Mau et al (12), Germany
Mean ± SD 40 ± 11; 34% ? 5,
4,603 patients in a national
Standardized employment ratio
Lower education level, local
Not analyzed
38% > 10
database
(lupus patients compared with
unemployment rates, longer
population) = 0.81
duration#
Utset et al (13), US
Mean ± SD 41 ± 12; mean ±
50 patients in a study of
48% not working due to lupus,
Neurocognitive impairment,
Not analyzed
SD 9 ± 8; 60% African
neurocognitive function
including 32% receiving long-
higher damage accrual
American, 26% white
term or Social Security
disability benefits
Bertoli et al (14), US
Mean ± SD 37 ± 12; mean ±
273 patients employed at
19% unable to work due to
Older age, male, poverty,
Not analyzed
SD 5 ± 3; 19% Texan
enrollment
disability after 5 years’ followup
longer duration, higher disease
Hispanic, 22% Puerto Rican
activity, higher damage accrual
Hispanic, 29% African
American, 30% white
Yelin et al (15), US
Mean ± SD 45 ± 11; mean ±
Work cessation: 673 patients
15%, 36%, 51%, and 63%
Female, older age, lower
Little change in hours worked
SD 12 ± 8; 66% white
employed at diagnosis, hours
stopped working after 5, 10,
education level, higher
among those who worked
worked: 878 patients ages 18–
15, and 20 years of disease
physical job demands,
continuously since diagnosis,
64 years
duration, respectively
high job demand with low
but decreased hours/week and
with any employment history
control, shorter duration
weeks/year among all ever
employed

* In all but 2 studies, disease duration is from the population that was analyzed for employment status. In Stein et al (5) and Boomsma et al (8), disease duration is from the total population. Total
population was 120 patients in Stein et al (5) and 114 patients in Boomsma et al (8). The studies by Sturfelt and Nived (4) in Sweden, Poole et al (9) in the US, and Mau et al (12) in Germany did not
report ethnicity.
† Independent predictors were statistically significant in multivariate analysis.

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‡ Also reported absenteeism data and data for some employment categories in comparison with general population figures, but the terms and analytic methods were not defined.
§ Study population is a subset of the population in Clarke et al (6). Demographic data is based on the baseline data; employment status and absenteeism are based on data from the 6-month followup
assessment.
¶ Study population is a subset of the population in Clarke et al (6). Patients were drawn from 2 clinics, one in London and one in Birmingham.
# These factors were associated with lower relative employment rates in univariate analyses in systemic lupus erythematosus (SLE) patients and in the multivariate analysis that included other rheumatic
diseases. Results from the multivariate analysis specifically for SLE patients were not provided. The study also included patients with rheumatoid arthritis (n = 26,071), ankylosing spondylitis (n = 5,564),
soriatic arthritis (n = 6,041), systemic sclerosis (n = 802), and Wegener’s granulomatosis (n = 385) in the database.

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After an initial review of basic eligibility requirements, the SSA sends disability benefit applications to the
Disability Determination Services (DDS) office in the claimant’s state (18). The DDS examines evidence from the
claimant’s medical records and treating sources to determine whether the person’s condition meets Blue Book
criteria. If that evidence is unavailable or insufficient, the DDS will arrange for a consultative examination from
either the claimant’s treating physician or an independent source. If the severity of the condition does not meet
Blue Book criteria, the DDS then assesses the claimant’s residual functional capacity, which is the remaining
ability to perform basic work-related activities, including the type of work performed in the past as well as any
other type of work. In addition to the medical evidence, the claimant’s age, education, skills, and past work
experience are all evaluated when determining residual functional capacity (16). If the claimant is judged able to
perform either his or her previous work or any other type of work, the claim is denied.
Patients under retirement age who receive benefits are reevaluated at regular intervals to determine if
they continue to meet the disability eligibility requirements. The frequency of these reviews can range from once
every 6 months to once every 7 years, depending on the severity of the impairment and the likelihood of
improvement (19). Therefore, the SSDI and the SSI programs have the potential to help patients through a
difficult period caused by a disease flare or to provide long-term income support for patients who are severely and
permanently incapacitated. The level of support offered by these programs is relatively low, however. In 2006, the
average monthly payment for a disabled beneficiary receiving SSDI only, SSI only, or both SSDI and SSI was
$1,058, $578, and $699, respectively (19).
The total number of people with disabilities receiving disability benefits through the SSDI and/or SSI
programs in December 2006 was 9,542,360; approximately 21% (1,979,791) of these beneficiaries fell under the
broad diagnostic category of musculoskeletal system and connective tissue diseases, which includes lupus and
arthritis patients (19). Data on lupus patients and arthritis patients specifically are not available. From 1996–2005,
only 31% of all worker applicants were awarded Social Security benefits after the initial DDS determination (19).
After consideration of appeals, the final rate of allowed claims for the same time period was 48%. The SSA does
not publish data on the rate of allowed claims broken down by medical condition or diagnostic category. However,
we were able to obtain unpublished data from the SSA indicating that, between 2000 and 2005, the ratio of
allowed to denied claims at the initial level of review for the SSDI and the SSI programs combined was lower for
diffuse diseases of connective tissue (including lupus patients) than for the categories of heart failure, arthritis, or
the sums of all diseases (US Social Security Administration: unpublished data).
A common barrier to qualifying for Social Security disability benefits is incompleteness of medical records,
resulting from either the patient’s failure to discuss symptoms and work-related functional limitations with the
physician or the physician’s failure to describe the extent of these limitations in the patient’s records (20–23). For
SLE patients in particular, an additional difficulty in obtaining Social Security benefits may arise from the type of
symptoms that can contribute to work disability such as fever, fatigue, pain, and neurocognitive dysfunction
(4,5,13), which may be neither easy to assess and quantify on physical examination nor proven by laboratory or
imaging methods (23,24). The Systemic Lupus International Collaborating Clinics Damage Index (1) and disease
activity indices (25) do not focus on work-related functional limitations or disabling symptoms. In addition, many
lupus patients experience periods of flares and periods of remission, making the assessment and consistent
documentation of disability more complex. Without hard medical evidence and clear documentation, patients with
lupus may fail to meet Blue Book criteria and may not be able to prove loss of residual functional capacity despite
having symptoms that significantly impair their ability to work.
Liang et al (24) examined the agreement between the SSA determinations, physician assessments of
work disability, and a standardized evaluation of work capacity in 52 patients with either arthritis or lupus who
submitted new disability claims to the SSA. A breakdown of the study population by disease type was not
provided. Rheumatologists’ judgments of work disability (30 patients rated unable to work) agreed with SSA
determinations (25 patients rated unable to work) in 67% of cases (k = 0.35, P = 0.01). Agreement was
associated with younger age and lower socioeconomic status. The rheumatologists’ evaluations were related to
ratings of upper- and lower-extremity dysfunction to a greater degree than seen with the SSA ratings. SSA
judgments agreed with the standardized evaluation of work capacity in 62% of cases (k = 0.23, P = 0.10). The
authors concluded that judgments of function based on patient medical records do not accurately reflect
observed performance. They also suggested that an observed performance evaluation such as the work capacity
evaluation used in the study might be more useful to the SSA than chart review in certain cases.
DISCUSSION
Lupus most often occurs in the young and mid-adult years, and many lupus patients can expect to live for
decades with chronic disease (2). It is important to characterize the experience of these patients as they attempt
to cope with long-term morbidity while living normal productive lives. The available studies, summarized in Table
1, show that work disability in patients with SLE is common, with at least 20% of patients reporting a cessation of

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employment approximately 10 years after diagnosis. Several limitations can be seen in these studies: many were
small, most were not prospective, many did not include productivity measures such as absenteeism, few studies
included a population comparison group, and there were variable definitions of work disability. Future studies
should address these limitations.
Data pertaining to the use of federal disability programs in the US are relatively limited. We found only 2
published studies with data on the prevalence of patients with SLE receiving Social Security disability benefits
(9,13), and one study of lupus and rheumatoid arthritis patients that examined the process of obtaining benefits
(24). The SSA data we obtained indicated a higher initial disapproval rate of applications from patients with diffuse
diseases of connective tissues compared with patients with other diseases.
Given the relatively low rate of allowed claims and the low level of monthly benefits available to patients
who receive assistance through the federal disability programs, efforts to help patients maintain employment
would be particularly useful. Additional research on the risk factors for work disability in lupus patients and on
strategies for reducing the impact of these risk factors on work-related activities is needed. Some evidence
indicates that certain specific clinical factors such as neurologic symptoms, joint pain, and fatigue may be primary
factors contributing to work disability or decreased work capacity in lupus patients. The impact of these factors
could be lessened if we understand how they affect patients’ ability to work and what aspects of work are most
affected. For example, if pain is the primary cause of disability, development of a tailored pain management
program could enable the patient to continue working. If a patient’s job involves physical labor that aggravates
joint pain, certain assistive technologies or vocational rehabilitation may be useful in allowing the person to
continue to perform his or her duties. Similarly, if fatigue is the main factor contributing to work disability, exercise
programs or flexible work schedules may be helpful. Studies that attempt to better characterize the reasons why
disabled patients with lupus are unable to work are needed before such interventions can be developed.
It would also be useful to produce better quantitative measures of the symptoms responsible for work
disability in lupus patients. Although several scales are available for some features such as fatigue (26), additional
research should focus on assessing the impact of these symptoms on lupus patients’ ability to perform work-
related activities. These types of quantitative scales and measures would allow for more consistent and clearer
documentation of work disability in patients with lupus, which may increase the success rate of disabled lupus
patients applying for Social Security disability benefits. Possible templates for these kinds of measures are the
standardized evaluation of work capacity used in the 1991 study by Liang et al (24), but more development and
validation work is needed.
Efforts to educate both patients with lupus and physicians about work disability and the Social Security
disability claims process and research on factors that may influence the success of lupus patients in obtaining
disability benefits would also be useful. Physicians and patients need to work together to ensure that the nature
and severity of work-related functional limitations are consistently and accurately recorded at each office visit,
because this is the information used in the determination of disability eligibility. Studies of patients with lupus and
patients with other rheumatic diseases applying for Social Security disability benefits could help elucidate the
factors that influence whether these claims are denied or allowed. Comparative analyses of disability benefit
systems in other countries as they relate to autoimmune diseases such as SLE would also provide a broader
context for evaluation of the experience of patients in the US.
The economic costs associated with work disability in patients with SLE can be substantial, and indirect
costs due to lost wages are greater than direct medical costs (3). Additional indirect costs associated with work
disability may include loss of self-esteem, limited opportunity to socialize with others, diminished ability to support
dependents and to accumulate assets for retirement, limited access to employer benefits such as health
insurance and pension plans, and decreased ability to perform non–labor market activities such as housekeeping
and child care (3,6,10,15). Therefore, research in work-related disability and initiatives to help reduce the
incidence of work disability in lupus patients and to assist lupus patients who are truly work disabled in obtaining
the financial assistance they need represent a critical need for comprehensive care of patients with this chronic
disease.
ACKNOWLEDGMENTS
This article is based in part on presentations and discussions that took place during the workshop entitled “Lupus
and the Environment: Disease Development, Progression and Flares” held in Washington, DC, September 2005.
The concept for this focused workshop was produced by the Federal Interagency Working Group on Women’s
Health and the Environment.
AUTHOR CONTRIBUTIONS
Dr. Cooper had full access to all of the data in the study and takes responsibility for the integrity of the data and
the accuracy of the data analysis.

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Study design. Alarcón, Cooper.
Acquisition of data. Scofield, Alarcón, Cooper.
Analysis and interpretation of data. Scofield, Reinlib, Alarcón, Cooper.
Manuscript preparation. Scofield, Alarcón, Cooper.
Organization of discussion and funding of workshop. Reinlib.
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