EDUCATIONAL, VOCATIONAL AND SOCIOECONOMIC STATUS AND
QUALITY OF LIFE IN ADULTS WITH CHILDHOOD-ONSET SYSTEMIC LUPUS ERYTHEMATOSUS
(LONG
TERM FOLLOW UP DATA FROM A SINGLE PEDIATRIC CENTER)
Elizabeth Candell
Chalom1, Breno Periera2, Robert Cole2,
1.
St. Barnabas Medical Center
2. Dept of Pediatrics
Faculdade de
Medicina da Universidade Federal
De Goias
3. Allied
475
4. The Center for
Childhood Arthritis and Rheumatic Disease
The Children’s
3405
Civic
RM 236 CSH Building
5.
Running
Title: Long term follow-up of
Children with SLE.
Key
Words: Systemic Lupus
Erythematosus, Children, Follow-up,
Quality of Life
(Presented at the
IV th Park City conference in Pediatric Rheumatology at Park City, Utah on
March 14-18, 1998; Supported by grants
from the Lupus Foundation of Southeastern Pennsylvania and The Gilbert Trust.)
Contact: Elizabeth Candell Chalom, MD
Phone: 973-322-7600
e-mail: echalom@sbhcs.com
Abstract:
Objective: To document the
educational status, work experience, marital status, child-bearing experience
and quality of life of young adults who had childhood – onset SLE.
Method: Descriptive data was obtained
from medical records. Patients who were
contacted provided further descriptive and socio-economic data in a specially
designed form and completed SF-36 forms.
Their current rheumatologists completed a medical questionnaire
including a SLEDAI.
Results: Descriptive data
was available from 64 patients. Complete medical data including current
condition, SLEDAI and SF–36 forms were completed on a sub-sample of 29 patients
who were followed for a mean period of 13.0 years. This report describes the
sub-sample. Fifteen of 29 patients (52%)
had active disease (SLEDAI > 4), and the mean SLEDAI score was 6.4. Chronic damage to
organ systems was seen commonly in the kidneys, CNS, skin, bones and eyes.
Approximately 55% of patients had enrolled in, or had completed college, another
33% had completed high school, and the remaining 11% had not completed high
school. Just over 50% were
employed, either part time or full time.
Over 70% lived in a household with a total annual income less than
$30,000. Twenty-two of the patients in the sub-sample were women, nine of whom
attempted to have children. All were eventually able to conceive and deliver
normal children. Three had spontaneous
abortions followed by normal deliveries.
The score for the physical component of the SF-36 was lower than
population estimates. The estimated
cumulative proportion surviving following disease onset at 5, 10 and 15 years
post-onset were 93.8%, 87.4% and 79.5% respectively.
Conclusions: More than 50% of young adults with childhood-onset
SLE still had active disease at the time of follow-up.
Most had completed high school, but were living in households earning less than
$30,000 per year. QOL measures showed limitation in physical
functioning. Life
table analysis showed that over 79% of the sub-sample had survived more than 19
years following disease onset.
Introduction:
Prognosis in
childhood SLE has improved considerably in the past two decades, probably
secondary to earlier diagnosis, better treatment of the disease and its
complications, and improved critical care techniques. Consequently, children
with SLE are living longer and enter adult life with a chronic disease and
morbidity related to organ damage, treatment, and psychosocial impact. All of these factors affect patients’
function [1]. It is interesting to note
that most studies on prognosis of patients with SLE, even in adults, focus on
morbidity and mortality and not on their ability to complete school or college,
hold a job and earn a living - in
essence to function in life. Now that
children with SLE survive into adulthood, it is important to assess their
status at school, at work and in family life.
A number of health
status instruments have been developed to measure functional outcome in
patients with rheumatic diseases [2, 3].
Functional assessment scales such as Health Assessment Questionnaire
(HAQ), Arthritis Impact Measurement scale (AIMS) and Child Health Assessment
Questionnaire (CHAQ) measure function as affected by the disease and include
items to assess morbidity, disability and discomfort. Thus, they measure function as related to
health status. However, patients view
life more broadly in relation to their ability to function in life. Non-health related factors such as energy
level, role limitation, social functioning, psychological health and perceived
health status all contribute to one’s sense of well being. All of these items have been incorporated
into special scales to measure quality of life such as Medical Outcomes Study
Short Form 36 (SF-36) [4]. These scales
are being used increasingly in clinical practice, research and health policy
evaluations of chronic diseases in general. Functional measurement scales [5]
and quality of life scales [6-10] have been used in adults with SLE.
There is no
follow-up study of patients diagnosed with childhood SLE who are now adults
which documents their educational level, work experience, income level, ability
to lead an independent life and their quality of life. In the present report, we document our
findings on 29 individuals with
childhood-onset SLE followed for 5 to 26 years (Mean = 13.0, SD = 6.1), with
special emphasis on the following functional areas: educational level,
employment status, marital life, obstetrical history and quality of life. No attempts were made to correlate function
with any disease-related or non-disease related variables.
Materials and Methods:
All patients
followed at the Children’s
A
subset of these patients, all of them over the age of 16.3 years, gave consent
to be evaluated by their rheumatologists for this study. The rheumatologists completed another set of
questions about organ damage, obstetrical history and current disease activity
(SLEDAI). In addition, these patients
completed a SF-36 questionnaire. This
questionnaire was obtained either through the mail or over the phone. Medical charts were examined on all patients
and, for deceased patients, autopsy reports were obtained whenever possible.
Percentages were used to summarize
categorical data. Means and standard deviations were calculated for all
continuous variables. A Kaplan-Meier analysis was performed to summarize
survival following disease onset.
RESULTS
We contacted 93 patients with SLE
seen between 1970 and 1993. We were able to collect data on school or college
years completed, work, income level, marital status and child bearing
experiences in 64. Data from recent
physical examination by a physician, SLEDAI score and SF-36 form were completed
in 29 of these 64.
Demographics:
We compared the
demographic data from the 29 with complete data with the total group of 64
(Table 1) and found them comparable. This included demographic and co-morbidity
information obtained from the medical records at the time of the patient’s last
follow-up. Fifty-two of the patients
were female (81.2%). The racial background of the group was mostly
Afro-American (31 patients - 48.4%) and Caucasian (26 patients - 40.6%). The mean period of follow-up was 13.6 years
[standard deviation (SD)=6.3, range=1-26].
The mean age of the patients at the time of their last follow-up
appointment was 25.5 years (SD=6.4; range=12-38). The mean age at the onset of symptoms was
11.9 years (SD=3.1; range=1-16).
In the sub-sample
of 29 patients with complete current data, 22 (75.9%) were female. The mean period of follow-up was 13.0 years
(SD=6.1, range=5-26). The mean age at
the time of their last follow-up was 23.6 years (SD=5.6; range=12-36), while
the mean age at onset was 11.3 years (SD=3.1; range=5-16). The racial background of this group was
mostly Afro-American (44.8%) and Caucasian (31.0%).
Medical and Life status:
The twenty-nine
patients in the follow-up group completed the CSH-1 form. Physician collected information contained in
CSH-1 is presented in Table 2, while socio-demographic information provided by
patients is presented in Table 3. In
some instances, data were available for less than 29 patients, in which case
the number of patients evaluated is given.
Fifteen patients
(51.7%) still had active disease as determined by a SLEDAI score of greater
than 4. The mean SLEDAI score was 6.0
(SD=6.9). Because of the small sample
size and the retrospective nature of the study, we did not attempt to correlate
the SLEDAI score with any predictor.
Irreversible damage
to organ systems, as documented by physicians is shown in Table 2. Twelve patients (46%)
had renal impairment, 11 (42%) had permanent cutaneous lesions, six (23%) had
CNS problems (CVA, seizures, or dementia), five (19%) had orthopedic problems
(mostly AVN), and two (8%) suffered from eye disease. Cardiac (not including the 2 who died of
myocardial infarction), pulmonary and gastrointestinal impairments were found
in one patient each (4% per impairment).
No patient developed neoplastic disease.
Nine of
the women attempted to have children.
Three had spontaneous abortions followed by normal pregnancies, and one
had a medical abortion followed by a normal pregnancy. All nine women were eventually able to
conceive and deliver normal children.
Patient-reported
socio-demographic details are noted in Table 3. Three
patients (11%) had graduated from college and 12 (44.4%) were currently
enrolled in college classes. Nine patients (33.3%) had completed high school
and only three did not complete high school.
Thirty-eight percent felt that their further education was
impaired by their illness. Almost half
of the patients were working either part time or full time and 25.9% were still
attending school. Three patients (11%)
were receiving disability and two (7.4%) were unemployed.
Five of
the twenty-nine patients were married. Seven
lived with a spouse or a partner. Twelve
lived with their parent(s). Six lived
with another adult and only four were living alone. The majority of them lived in a household
with yearly income of less than $30,000.
Approximately one-third depended on Medicaid for medical insurance and
two had no insurance.
Short Form 36 (SF – 36)
Mean scores of our patients were
compared to
Survival
A Kaplan-Meier
analysis was performed to estimate the survival function in the entire sample
(n=64; Figure 1). Individual
observations were censored if patients had not expired since the time of their
last follow-up appointment. Eight of the
64 patients (12.5%) expired. Death
occurred 1 to 18 years after diagnosis (mean=9.3,
SD=6.2).
Kaplan-Meier
survival curve is shown in Figure 1 and life table summarizing estimated
survival of the group is shown in Table 5.
The estimated cumulative proportion surviving following disease onset at
5, 10 and 15 years post-onset were 93.8%, 87.4% and 79.5% respectively. The causes of death included sepsis (3),
myocardial infarction (2), CNS disease (1), hypertensive crisis (1) and suicide
(1).
DISCUSSION
This report is a
descriptive analysis of an available sample of 29 young adults with childhood
onset SLE. Although information on education and current life situations was
available for 64 patients, we included in this report only the 29 in whom all
of the data was completed including a recent physical examination by a
physician and SF-36 form. This pre-selection is an inherent limitation of this
report. However, since information on educational level, work experience,
income and marital status are not documented adequately in the literature for
this group of patients, we felt it was worthwhile to document this experience
spanning a period of 26 years from one center. Furthermore, in a recent report
on adult patients from a single center lost to follow up, Gladman et al noted
that the survival data of patients continuing in follow up was not affected
significantly by the missing group [11].
We realize that extrapolation from this small and selected sample is not
justified and prospective studies including controls are needed.
Most of the studies
on prognosis and follow up of adults with SLE focus on mortality and morbidity
and coping strategies, and a few recent studies in adults include measurement
of QOL [6-10]. Very little information is available on the impact of the
disease on other aspects of life such as education and work status [12]. There are several studies documenting the
educational level, work experience and employment status of children with JRA
growing up to be adults [13-18].
In our
group we found that more than 85 % of patients completed high school and 11%
completed 4 years of college. It is also interesting to note that approximately
one third felt that the disease interfered with their education. If those with
CNS disease were to be evaluated separately, this number may be higher. In the
report from Canada, Dobkin et al [12] documented that most of their adult
patients with SLE had completed 3 to 18 years of education (mean 13.77
years). Follow up studies on patients
with JRA show that more than 90 % completed high school and 15-30% completed
college [13-19].
In our group, 25% had full time employment and
22% had part time jobs. Eleven percent were on disability and 7.4% were
unemployed. The Canadian data on adults with SLE does not mention the work
status but states that the mean income was in the $ 20,000 to 30,000 per year
range [12]. In contrast, 62 to 66 % of patients who had JRA hold full time job
and 16% were disabled. [13, 15]. Although most of our patients were drawn from
a central city population with poorer socioeconomic condition, it appears that
patients with SLE may have problems holding full time jobs. This, together with
the low income and the fact that over 75% live with parents suggest that the
impact of SLE on education, job and income is significant. Moreover this data clearly points to the
importance of transition and career planning [19]. A prospective study should focus on these
areas and analyze the reasons for these problems.
The study in adults with SLE from
SLEDAI score of
>4 is considered to be an evidence of active disease for purposes of this
study. Based on this definition, 15
(51.7% of the sub-sample) had active disease.
This is an important observation and is not surprising. Long term
studies on patients with JRA show that approximately 45 % patients had active
disease at 10 year follow-up [21].
Although the prevalence of SLE in children is less than JRA, SLE is a
devastating disease. The persistence of the disease, the effects of damage to
organs such as the kidney and the CNS, and the chronic fatigue are more likely
to interfere with attaining higher education and holding a permanent job. Future studies need to focus on these needs
of young adults with SLE. This study was done before the availability of
instruments to measure cumulative organ damage. This was not the focus of the
study either. However it is obvious that the majority of these patients enter
adult life with active disease and substantial damage to kidneys, CNS and
musculoskeletal system. Bone demineralization, growth retardation and cataract
were some of the treatment-related damage that were noted.
SF-36 is an instrument developed to measure
quality of life (QOL) in patients with all chronic diseases [4, 22]. This
instrument has been used in several studies to measure QOL in adults with SLE
[6-10]. However this instrument has not
been used, to our knowledge, to measure QOL of adults with childhood-onset SLE.
Nor is there any study in children with SLE using comparable QOL measurements.
Sutliffe et al showed that patients with SLE scored lower than controls by more
than 20 points on the SF-36, particularly in the physical aspects of QOL
[8]. Lower scores correlated with
increased disease activity. Dobkin et al
did not use normal controls but compared SF-36 scores between patients with mild
and severe disease as documented by SLAM scores [7]. Patients with more active SLE scored lower in
PCS and MCS compared to less active SLE.
Those with more active disease also reported more bodily pain, worse
general health status, and decrease in social and physical functioning.
In a more recent
prospective study, Thumboo et al [9] used a slightly
different method of scoring SF-36 questionnaires. The primary Focus of their study was change in function
over time in adults with SLE. They
noticed that the disease activity was not a strong indicator of QOL in general.
However, after adjusting for variables, they noted that disease activity
influenced mental health aspects of life, which in turn affected overall QOL.
In our study,
patients with SLE scored lower on SF-36 scores compared to
Eight patients
(12.5% of the overall sample) died during the period of follow-up. The
estimated cumulative proportions surviving following disease onset at 5, 10 and
15 years post-onset were 93.8%, 87.4% and 79.5% respectively compare favorably
with data from adult studies [23]. In a
review of the literature of lupus nephritis in children, maximum rates of
survival at 5 years was noted to be 92%; and figures for 10 and 15 year
survival were 88% and 84% respectively [24].
In a report by Lacks and White who followed children with SLE for a
period of 1 month to 10.7 years, 5 year survival was 85% [25]. In a study
comparing clinical features and outcome of SLE with onset in childhood and
adults, Tucker et al noted that the10 year survival was 95% in childhood –
onset type compared to 85% in the adult – onset variety [26].
Analysis of the
cause of death showed that three of our patients died of sepsis. In most
studies on mortality in SLE, sepsis is clearly a leading cause of death in
adults and in children [23, 25, 26]. Two of our patients died of myocardial
infarction (MI), one male at age 19 and another female at age 31. MI has not
been mentioned in two studies on organ damage in childhood SLE [27, 28].
Results from two large studies in adults indicates that active SLE and
infections are common causes of death soon after the onset of the disease,
whereas cardiovascular causes and malignancy become major causes of death for
later deaths [29, 30]. Early onset of atherosclerosis in patients with SLE was
considered to be secondary to steroid therapy until recently. However, there are evidences to suggest
inadequate control of inflammation as a more probable cause [31]. In childhood onset SLE this becomes more
important since one of the goals should be to minimize such complications.
In summary, 50% of children with SLE followed
up to 25 years still had active disease at the time of our study. The majority
of them had completed high school and almost 50% of the study population was in
college or had some college level education.
Most of them were employed but earning low income. Those with active disease were experiencing
low QOL, particularly in physical function.
ACKNOWLEDGMENT
Our sincere thanks
to the following physicians who helped us evaluate patients and score them on the
SLEDAI scale for disease activity: Drs.
Sally Pullman-Moar, Gregory Keenan, Bonnie Dorwart, Steven Berney and Maria
Rizzo. We would also like to thank the
Lupus Foundation of South Jersey.
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Table 1 – Demographic Analysis
Variable Total
Sample SUB-SAMPLE
Percentage Percentage
(n=64) (n=29)
Gender
Female 52
(81.2%) 22(75.9%)
Male 12(28.8%) 7 (24.1%)
Racial Background
Afro-American 31(48.4%) 13(44.8%)
Asian 2(3.1%) 2(6.9%)
Caucasian 26(40.6%) 9(31.0%)
Hispanic 3(4.7%) 3(10.3%)
Other 2(3.1%) 2(6.9%)
OTHER mean
(SD) mean (SD)
Age at
onset (years) 11.9
(3.1) 11.3 (3.1)
Age at
follow-up (years) 25.5
(6.4) 23.6 (6.0)
Mean
period of follow-up (years) 13.6
(6.3) 13.0 (6.1)
Table 2 – Physician Collected Medical Information
VARIABLE PERCENTAGE
Active Disease –
SLEDAI > 4 15 (51.7%)
Permanent Organ System Impairment Due to SLE (n=26)
Renal 12(46.4%)
Skin 11(42.3%)
CNS 6(23.1%)
Orthopedic 5(19.2%)
Visual 2(7.7%)
Cardiac 1(3.8%)
Pulmonary 1(3.8%)
Gastrointestinal 1(3.8%)
Neoplastic Disease (n=28)
Present None
(0.0%)
Pregnancy related
issues in Women (n=22)
No
Pregnancies 12
(54.5%)
Pregnancies 9
(45.5%)
Spontaneous Abortion 3
Medical Abortion 1
Spontaneous and Medical Abortion 1
Health Complications in
Children born to the Study’s Participants (n=9)
Health
Complications None
(0.0%)
Table 3 – Patient
Reported Socio-demographic Data
VARIABLE PERCENTAGE
Highest Educational
Status (n=27)
Incomplete
High School 3
(11.1%)
High
School Graduate 9
(33.3%)
Incomplete
University/College 12
(44.4%)
University/College
Graduate 3
(11.1%)
Was Further
Educational Progress Impaired by SLE (n=24)
No 15
(62.5%)
Yes 9
(37.5%)
Work Status (n=27)
Part-Time 9
(29.6%)
Full-Time 6
(22.2%)
Student 7
(25.9%)
Disabled 3
(11.1%)
Unemployed 2
(7.4%)
Marital Status (n=29)
Never
Married 24
(82.8%)
Married 5
(17.2%)
Living Arrangement
(n=29)
Lives
with Parents 12
(41.4%)
Lives
with Relatives (other than parents) 6
(20.7%)
Lives
with Partner/Spouse 7
(24.1%)
Lives
Alone 4
(13.8%)
Household Income
(n=24)
Under
$10,000 4
(16.7%)
$10,000-$19,000 5
(20.8%)
$20,000-$29,000 8
(33.3%)
$30,000-$39,000 1
(4.2%)
$40,000-$49,000 0
(0.0%)
$50,000-$59,000 1
(4.2%)
$60,000-$69,000 0
(0.0%)
$70,000-$79,000 3
(12.5%)
$80,000
and Up 2
(8.3%)
Medical Insurance Type
(n=29)
HMO 7
(24.1%)
Medicaid 10
(34.5%)
Traditional 7
(24.1%)
PPO 3
(10.3%)
No
Insurance 2
(6.9%)
Table 4 – SF-36 Physical
Component Scores (PCS) and Mental Component Scores (MCS)
Group Mean PCS
(SD) Mean MCS (SD)
SLE Sample 40.3 (11.3) 47.9
(12.6)
General Population* 50.0 (10.0) 50.0 (10.0)
*General United States Population
Norm. (9)
Table 5 – Life Table
Follow-Up Estimated Cumulative Standard Error
Time Period Proportion Surviving
1.0 years 0.992 0.011
5.0 years 0.938 0.030
10.0 years 0.874 0.043
15.0 years 0.795 0.059
20.0 years 0.663 0.082
25.0 years 0.398 0.146
Figure 1 – Kaplan-Meier
Survival Function
