The Journal of Rheumatology 2021;48:915–23

doi:10.3899/jrheum.191004
First Release May 1 2021

Effects of Childhood-onset Systemic Lupus Erythematosus on

Academic Achievements and Employment in Adult Life
Noortje Groot1, Anne Kardolus2, Marc Bijl3, Radboud J.E.M. Dolhain4, Y.K. Onno Teng5, Els Zirkzee6,
Karina de Leeuw7, Ruth Fritsch-Stork8, Alex Burdorf9, Irene E. Bultink10, and Sylvia Kamphuis2
ABSTRACT. Objective. Long-term outcome data in adults with childhood-onset systemic lupus erythematosus (cSLE)
are limited. Here, we report the effects of cSLE on education, vocation, and employment in a large cohort of
adults with cSLE.
Methods. Patients were seen for a single study visit comprising a structured history and physical examina-
tion. Medical records were retrieved to supplement information obtained during the study visit. Education
and employment status were assessed by questionnaires. Health-related quality of life (HRQOL) was mea-
sured with the 36-Item Short Form Health Survey (SF-36).
Results. One hundred six patients with cSLE (93% female, 73% White), with a median disease duration of
20 years, completed the visit and questionnaires. Almost all patients stated that cSLE had influenced their
education, but the level of completed education was similar to the general Dutch population. Half of the
patients had adjusted their vocational choice due to the disease. Still, 44% of patients who had finished edu-
cation did not have a paid job. Of the employed patients, 61% worked part time. Disease damage was equally
prevalent in patients with and without paid employment. A high percentage of patients (51%) were declared
work disabled, due to disease damage. Patients who did not have paid employment were often work disabled.
Both had a negative effect on HRQOL.
Conclusion. The effect of cSLE on academic achievements and employment is substantial, despite patients
adjusting their educational and vocational choices. To optimize participation in the community, ongoing
support is necessary, not only to help patients find suitable education and vocations but also to offer guidance
regarding potential adjustments during their career.

Key Indexing Terms: damage, educational status, employment, outcome assessment, quality of life, systemic
lupus erythematosus

Systemic lupus erythematosus (SLE) is a chronic, multisystem disease-specific features such as arthritis, fatigue, and central
autoimmune disease with an unpredictable disease course. In nervous system involvement can attribute to a deviation from
10–20% of cases, SLE presents in childhood or adolescence.1 their original academic and vocational goals.
Patients with childhood-onset SLE (cSLE) have an additional Poor childhood health affects education, career path, and
burden of having to cope with the disease during adolescence, employment.6 Children with SLE have poorer school perfor-
an important period in their intellectual and physical devel- mance and meet fewer educational milestones than their healthy
opment.2,3,4,5 Aside from missing school due to hospital visits, peers.4 In children with juvenile idiopathic arthritis ( JIA), poor

This study was supported by the Dutch Arthritis Foundation and the National Clinical Immunology, University Medical Center Groningen, Groningen,
Association for LUPUS, APS, Scleroderma and MCTD (NVLE). No the Netherlands; 8R. Fritsch-Stork, MD, PhD, Professor, Department
financial support or other benefits from commercial sources were received for of Rheumatology and Clinical Immunology, University Medical Center
the work reported on in the manuscript. Utrecht, Utrecht, the Netherlands, and 1st Medical Department &
1
N. Groot, MD, PhD, Sophia Children’s Hospital, Erasmus University Ludwig Boltzmann Institute of Osteology at the Hanusch Hospital of
Medical Center Rotterdam, Rotterdam, and Department of Pediatric WGKK and AUVA Trauma Center, Meidling, Hanusch Hospital, and
Immunology, Wilhemina Children’s Hospital, University Medical Center Sigmund Freud University, Vienna, Austria; 9A. Burdorf, PhD, Professor,
Utrecht, Utrecht, the Netherlands; 2A. Kardolus, MD, MSc, S. Kamphuis, Department of Public Health, Erasmus University Medical Center
MD, PhD, Sophia Children’s Hospital, Erasmus University Medical Center Rotterdam, Rotterdam, the Netherlands; 10I.E. Bultink, MD, PhD,
Rotterdam, Rotterdam, the Netherlands; 3M. Bijl, MD, PhD, Department Amsterdam Rheumatology and Immunology Center, Location VUmc,
of Internal Medicine and Rheumatology, Martini Hospital, Groningen, the Amsterdam, the Netherlands.
Netherlands; 4R.J.E.M. Dolhain, MD, PhD, Department of Rheumatology, None of the authors report any conflicts of interest regarding this study.
Erasmus University Medical Center, Rotterdam, the Netherlands; Address correspondence to Dr. S. Kamphuis, Erasmus University Medical
5
Y.K.O. Teng, MD, PhD, Department of Nephrology, Leiden University Center, Sophia Children’s Hospital, SP-2460, PO Box 2060, 3000 CB
Medical Center, Leiden, the Netherlands; 6E. Zirkzee, MD, PhD, Rotterdam, the Netherlands. Email: [email protected].
Department of Rheumatology, Maasstad Hospital, Rotterdam, the
Accepted for publication July 13, 2020.
Netherlands; 7K. de Leeuw, MD, PhD, Department of Rheumatology and

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school functioning was associated with disease activity, func- primary, secondary, or tertiary education.27 Secondary education was defined
tional disability, and depressive symptoms.7 Young adults with as having finished secondary school (e.g., high school or vocational school),
JIA achieved similar education levels as their healthy peers but and tertiary education included academic education as well as advanced
vocational or professional education. Patients still attending secondary or
took longer to complete their education.8,9
tertiary education were classified as having finished primary or secondary
Higher academic achievements are correlated with higher education, respectively. Patients were defined as students when they were
frequencies of employment in the general population.10 One currently pursuing secondary or tertiary education. Additionally, patients
cohort study of adults with cSLE reported that patients are less were asked what their parents’ completed level of education was. Level of
likely to be employed compared to patients with adult-onset education was compared to the general Dutch population.23,28 Patients were
SLE (aSLE), despite similar education levels.3 In adults with JIA, asked whether their disease had affected their educational achievements (yes
associations between functional disabilities, disease duration, or no); if yes, patients were asked to give the reason(s) for this.
Patients were asked which categories described them best: having paid
medication use, and educational and employment status were
employment, looking for work, doing volunteer work, being a home-
suggested.11,12 maker (with/without children), being work disabled, studying, or being
Chronic diseases can affect work productivity. Patients may retired. These categories were not mutually exclusive. If categories were
call in sick (absenteeism) or may not be able to work as effi- conflicting, patients were asked to clarify. The number of hours patients
ciently (presenteeism) due to their disease. The work produc- with paid employment worked weekly was used to define full time (> 36 h)
tivity of patients with aSLE is often compared to the healthy or part‑time (≤ 35 h) jobs, as in the Netherlands, a full-time job is defined
working population but has not yet been studied in adults with as working > 36 hours.23 Employment status in our cohort was compared to
childhood-onset rheumatic diseases.13,14,15 the Dutch female population.23,29
In the Netherlands, work disability of individuals aged 18 years or older
Health-related quality of life (HRQOL) of patients with
is assessed during an objective process regulated by the Dutch government.30
(c)SLE is impaired compared to the general population.16,17,18 Individual capabilities are evaluated by a physician specializing in occupa-
No studies regarding the effect of employment status on the tional medicine. The extent to which a patient is able to work determines the
HRQOL of adults with cSLE have been performed. In adults size of the disability allowance. Patients who reported being work disabled
with JIA and those with aSLE, being employed is associated with and had a (part-time) paid job were classified as (partially) work disabled.
higher HRQOL.19 Receiving a disability allowance in JIA was Work disability was compared to the Dutch female population.31
associated with lower physical HRQOL.20 Patients were asked whether their disease had affected their career
choice or working hours, and if they had to adjust work activities or change
The Childhood-onset SLE in the NetherLands (CHILL-NL)
job type due to their disease. This was asked through yes or no questions and
study aims to assess the burden of disease in adults with cSLE. a comment box to indicate the reason(s). Questions from the Work Ability
Here, we report on education, vocation, and current employ- Index were used to assess work impairment.32,33 Presenteeism on the most
ment status of adults with cSLE compared to the general Dutch recent working day33 and absenteeism in the 3 months prior to study visit32
population, and the association of employment status and work due to their disease or to other circumstances were assessed.
disability with the HRQOL of patients with cSLE. Statistical analysis. Descriptive statistics were used to describe patient
characteristics. Regarding educational achievements, employment status,
METHODS and work disability, data were compared to the Dutch population using
Patients. All patients diagnosed with SLE prior to their 18th birthday who chi-square tests. Between-group comparisons of HRQOL scores in work
were ≥ 18 years of age and met the American College of Rheumatology disability and employment were made using the Mann-Whitney U test.
(ACR) criteria for SLE21 were eligible for inclusion. The study was designed Analyses regarding the presence of damage in association with employment
by the CHILL-NL study team together with a panel of 5 adult patients and work disability were done using the chi-square test. All analyses were
with cSLE. Details regarding enrollment and data collection have been performed in SPSS Statistics (v22; IBM Corp.). Unless referenced other-
described previously.22 In short, all patients were seen for a single study wise, all data regarding the Dutch general population were extracted from
visit. Information collected during this visit was verified and supple- StatLine, the database of the Dutch Central Bureau of Statistics.23
mented with information from medical records. Only data that could be
verified in the medical records were reported. The Research Ethics Board
RESULTS
of the Erasmus Medical Centre, Erasmus University approved this study
(MEC-2013-163). Written informed consent was obtained from all Patients. Of the 111 adults with cSLE included in the national
patients. This article focused on education and job histories among patients CHILL-NL study,22 106 (96%) completed questionnaires
with cSLE. Data from our cohort were compared to the general Dutch regarding education, work participation, and quality of life.
population (77% White, 13% non-White), matched for age.23 If available, Characteristics of the 5 patients who did not complete the ques-
data from the female Dutch general population were used for comparison.23 tionnaires are described in Supplementary Table  1 (available
Clinical characteristics and HRQOL. Demographics, medication use, disease from the authors on request). Patient characteristics of the 106
activity (SLE Disease Activity Index 2000 [SLEDAI-2k]24) and damage adults with cSLE are described in Table 1. Most patients were
(Systemic Lupus Erythematosus International Collaborating Clinics/ACR
female (93%), and White (73%). Notably, the general Dutch
Damage Index [SDI]25) at study visit were registered. High disease activity
was defined as a SLEDAI score  ≥  8. Damage was defined SDI  ≥  1. The
population data to which we refer reflects a population with
SLEDAI-2K domains “ongoing inflammatory rash” and/or “alopecia” were 13% non-White ethnicity.23,34 The median disease duration was
defined as factors affecting physical appearance.22 HRQOL was measured 20 years. Patients generally had low disease activity (median
with the 36-Item Short Form Health Survey (SF-36) and compared to SLEDAI  4), and 61% had developed damage (SDI  ≥  1).
SF-36 scores of the general female Dutch population.23,26 Musculoskeletal, renal, and neuropsychological damage were
Education and employment. Completed level of education was categorized the most common items scored on the SDI. HRQOL in the
according to the International Standard Classification of Education 2011 by CHILL-NL cohort was lower compared to the general Dutch

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916 The Journal of Rheumatology 2021;48:6; doi:10.3899/jrheum.191004

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Table 1. Cohort characteristics (n = 106). who specified other effects of cSLE on education, 3 reported
that education was affected by fatigue and arthralgia, 2 others by
Median (Range) or n (%) hospital admissions, 1 by the disease cSLE in general had, 1 by
incapacity to fulfill the physical tasks needed for his education,
Female (n, %) 98 (93)
Ethnicity (n, %) and the last 5 of 12 patients reported their disease had led to
White 77 (73) educational delay or they had to quit their study of choice.
Non-White 29 (27) Choice of secondary or tertiary education was affected in 58%
Age at study visit, yrs 33 (18–65) of patients by the limitations of their disease (Figure 1B). Five
Age at diagnosis, yrs 14 (4–17) patients (5%) only completed primary education (Figure  1C).
Disease duration, yrs 20 (1–55) Of these 5 patients, 2 had followed special education for physi-
Current CS and DMARD use 71 (67)
cally and mentally handicapped children due to the disease, 2 had
CS + DMARD 38 (36)
CS only 16 (15)
started secondary education but were not able to complete their
DMARD only 17 (16) studies. The remaining patient was in high school at the time of
Current HCQ use 72 (68) study visit. Sixty-seven patients (63%) had completed secondary
HCQ + DMARD/CS 51 (48) education (e.g., high school, college, vocational education) and
HCQ only 21 (20) 34 (32%) tertiary education (e.g., professional or academic
SLEDAI-2K score 4 (0–16) bachelor’s degree). Compared to the female Dutch population,
SDI score 1 (0–8) patients had a similar educational level (chi-square 0.70, P = 0.40
SDI ≥ 1 65 (61)
for completing secondary education and chi-square 0.46,
CS: corticosteroid; DMARD: disease-modifying antirheumatic drugs (i.e., P = 0. 496 for completing tertiary education [Figure 1C]). An
azathioprine, cyclosporine, cyclophosphamide, leflunomide, methotrexate, individual’s educational level may be related to the educational
mycophenolate mofetil, rituximab, tacrolimus); HCQ: hydroxychloro- level of the parents.35 A subset of 51 patients (48%), of whom
quine; SLEDAI-2K: Systemic Lupus Erythematosus Disease Activity Index 23 (45%) had completed tertiary education filled in a question-
2000; SDI: Systemic Lupus International Collaborating Clinics/American naire regarding the education level of their parents. The majority
College of Rheumatology Damage Index36. of the patients had an equal (43%) or higher educational level
(49%) than their parents. Educational levels of the parents were
population. Lower HRQOL was associated with high disease also similar to those of the general Dutch population (data not
activity (SLEDAI-2K ≥ 8) and changes in physical appearance. shown).
The presence of damage (SDI ≥ 1) negatively affected HRQOL Twenty-seven patients in the CHILL-NL cohort were
in the physical functioning domain only.22 students (median age 22 yrs, range 18–27). They were either
Effect of cSLE on education. Almost all patients (91%) reported pursuing secondary (37%) or tertiary (63%) education. Eleven
their education to be affected by the disease (Figure 1A). Absence students (41%) reported being work disabled.
from school (69%) was most commonly reported; 29% of the Vocation. More than half of the patients (58%) reported their
patients were held back a year, and 22% of the patients had to choice of vocation to be affected by the disease (Figure 2). Some
go to a lower level of education. Of the 11% (n = 12) of patients specified that their desired profession was not possible due to

Figure 1. Effect of cSLE on education (n = 106). (A) Patient-reported effects of cSLE on education in general. (B) Patient-reported effects of cSLE on
decision making regarding choice of secondary/tertiary education. (C) Completed level of education of patients with cSLE and the general population.
Completed education level was classified according to the International Standard Classification of Education 2011 (primary, secondary, or tertiary educa-
tion). cSLE: childhood-onset systemic lupus erythematosus.

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 Figure 2. Patient-reported effects of cSLE on choice of vocation (n = 106). Patients were asked whether their disease
affected their choice of vocation, with an option to specify in what way this was affected. cSLE: childhood-onset
systemic lupus erythematosus.

their disease, whereas other patients specifically mentioned that had influenced work participation (Figure  3B). Thirty percent
fatigue or physical complaints affected their choices. Others of employed patients worked fewer hours (partially) due to their
reported that their choice of vocation was affected, but that they cSLE, at a median age of 28 years. Twenty-two percent reported
had adjusted their choice when deciding what to study. Whether having changed their type of job due to the disease. In total, 28%
patients adjusted their vocation on a similar educational level or of all 78 patients had quit their job partially or completely due
changed to a lower level was unknown. to cSLE, at a median age of 27 years. Work productivity was
Employment. Students (n  =  27) and retirees (n  =  1) were impaired in 52% of the employed patients, with 43% reporting
excluded from analyses regarding employment. Of the remaining absenteeism and 25% reporting presenteeism. Of the patients
78 patients (95% female), 44% (n  =  34) did not have a paid reporting work impairment, 39% reported that this was due to
job. Significantly more patients with a paid job had completed cSLE.
tertiary education (22/44 = 50%) compared to patients without A substantial number of patients had developed damage,
paid employment (6/34  =  18%; chi-square 8.72, P  =  0.003). which was comparable in the employed and unemployed groups
Of the employed patients (n  =  44), most (61%) worked part (77% vs 66%, chi-square 1.03, P = 0.31; Figure 3C).
time, but that is significantly less than the 75% of the female Work disability. Half of the 78 patients with cSLE (51%) were
Dutch population (chi-square 11.08, P = < 0.001; Figure 3A). work disabled, compared to the 3.7% work disability rate in
Notably, part-time employment rate in Dutch women is very the female Dutch population (Figure  4A).31 As expected, the
high compared to the mean part-time employment rate of 26% proportion of patients who were work disabled was higher in the
for women in Europe.36 The majority of unemployed patients group without paid employment (82% vs 30%, chi-square 21.45,
(n = 34) reported to have 1 or more (nonpaid) occupations in P  <  0.001; Figure 4B). Patients who were employed despite
daily life: 45% were homemakers, 28% did volunteer work, and being (partially) work disabled (n  =  13) worked fewer hours
21% took care of their children. compared to the employed patients who were not work disabled
More than half of the 78 patients reported that the disease (median 20 vs 31 hours, Mann-Whitney U test P = 0.01; data

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918 The Journal of Rheumatology 2021;48:6; doi:10.3899/jrheum.191004

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 Figure 3. Effects of cSLE on employment. (A) Percentages of full-time and part-time working patients with cSLE (n = 44) and the
general female population. (B) Patient-reported effects of the disease on employment (n = 78). (C) Presence of damage in patients
with and without paid employment (n = 78). ** P < 0.01 with chi-square test. cSLE: childhood-onset systemic lupus erythematosus.

not shown). Patients who were work disabled reported that Figure  5C. Interestingly, HRQOL of patients who were work
choice of education (68% vs 46%) and vocation (76% vs 35%) disabled was lower in the majority of the domains, irrespective
had been affected by the disease more often than patients who of having a paid job.
were not work disabled (chi-square 3.98, P = 0.046 and 12.96,
P < 0.001, respectively). DISCUSSION
Not surprisingly, the number of patients with damage was To our knowledge, this is the first study that addresses not only
significantly higher in the work disabled group (81% vs 60%, academic achievement and employment in adults with cSLE but
chi-square 4.14, P = 0.04; Figure 4C). Neuropsychiatric damage also the self-reported influence of the disease on education and
was overrepresented in the patients who were work disabled career.
(chi-square 4.06, P = 0.04). No significant difference in muscu- Almost all adults with cSLE reported that their education
loskeletal (chi-square 2.998, P = 0.08) or renal (chi-square 0.04, was hindered by the disease. Indeed, a cross-sectional study in
P  =  0.85) damage between patients with and without work children with cSLE showed that school attendance of most
disability was found. patients was negatively affected by the disease.5 Additionally,
Influence of employment and work disability on HRQOL. Patients patients struggled with schoolwork; this is associated with
without paid employment reported lower HRQOL in all SF-36 disease activity and treatment.4,5 Academic outcomes of patients
domains (Figure  5A; Supplementary Table  2, available from in the CHILL-NL cohort, however, were similar to the general
the authors on request). Patients who were work disabled also Dutch population. In the only other cohort of adults with
reported lower HRQOL in all SF-36 domains compared to cSLE reporting on educational outcomes, educational levels of
patients who were not work disabled (Figure 5B; Supplementary adult patients with cSLE were similar to patients with aSLE.3
Table  2). As work disability is closely related to employ- Comparing educational outcomes of patients with cSLE with
ment status, the effect of the combination of both is shown in that of aSLE is difficult, as the latter group is generally diagnosed

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 Figure 4. Work disability in patients with cSLE and the relation with employment status and disease damage (n = 78). (A) Work
disability in patients compared to the general Dutch population. (B) Employment status of patients with (n  =  41) and without
(n = 37) work disability. (C) Presence of damage in patients with (n = 41) and without (n = 37) work disability. * P < 0.05. ** P < 0.01
with chi-square test. cSLE: childhood-onset systemic lupus erythematosus.

after finishing their academic career. Although parental educa- (59%) of patients without paid employment in a Dutch aSLE
tion level was known for only half the cohort, the level of cohort (93% female, mean age 38.4 yrs).40 This might be because
education of patients and their parents was similar or higher. patients with cSLE have had the opportunity to adjust their
Patients may take longer to finish their education; similar vocational choice. As this was reported by many patients in
results have been reported in adults with JIA and other chronic the CHILL-NL cohort, they may therefore be better prepared
childhood-onset diseases.8,37 when entering the work force. When diagnosed with SLE in
Finding suitable education and vocation is part of the prepa- adulthood, career choice is often already made and disease
ration of young people with chronic diseases for adult-oriented manifestations may prevent patients from continuing their
healthcare systems, where they need skills to manage their disease job.3 The only other study available that looked into employ-
independently. Many patients in this cohort reported that their ment in cSLE showed conflicting data: adults with cSLE had
choice of education and vocation was affected by their disease. a higher risk of not having paid employment compared to
Patients who struggle with these choices during the transition patients with aSLE.3 As this study was performed in the United
process in adolescence need optimal support to give them the States,3 local circumstances may contribute to this difference.
best chance to get a paid job in future.38,39 For instance, the opportunities to work part time and receive
Recommendations for a successful transition to adult-centered (partial) disability allowance may be more easily available in
care of young people with rheumatic diseases have been the Netherlands.36
formulated by the European Alliance of Associations for Another factor accounting for the differences in employ-
Rheumatology and the Paediatric Rheumatology European ment rate may be the education level. Employed patients in the
Society.38 Disabilities, strengths, and abilities should be assessed CHILL-NL study had completed tertiary education more often
by the patients, parents, and pediatrician together. Career explo- than patients without a paid job. That higher education can
ration should be embedded in this transition.38 partly counteract the adverse effects of disease on paid employ-
In the CHILL-NL cohort, 44% of patients did not have a ment has also been shown in adults with JIA and patients with
paid job. This is lower compared to the reported percentage aSLE.19,41

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 Figure 5. HRQOL in patients with cSLE related to employment and work disability (n = 78). HRQOL is expressed as mean SF-36
scores per domain. Spider plots show mean scores within each domain of the SF-36, ranging from 0 (worst) to 100 (best). (A) SF-36
scores of unemployed and employed patients with cSLE. (B) SF-36 scores of patients with cSLE who were work disabled. (C) SF-36
scores of employed patients with cSLE who were work disabled, compared to SF-36 scores of employed patients who were not work
disabled. * P < 0.05. ** P < 0.01 with Mann-Whitney U test. BP: bodily pain; cSLE: childhood-onset systemic lupus erythematosus;
GH: general health perception; HRQOL: health-related quality of life; MH: mental health; PF: physical functioning; RE: role
limitations due to emotional problems; RP: role limitations due to physical problems; SF: social functioning; SF-36: 36-item Short
Form Health Survey; VT: vitality.

Work productivity was affected by the disease, which has may facilitate higher HRQOL due to higher financial rewards
also been reported in patients with aSLE.15,42 High autonomy and feelings of independence and self-worth.19 A negative effect
regarding work activities is important for maintaining paid on HRQOL was seen in patients who were work disabled.
employment.43 This holds true for SLE as well, as it has an unpre- Being work disabled appeared to overrule the positive effect of
dictable course. A flexible workplace with autonomy regarding employment on HRQOL in this group. Further, patients who
working activities and opportunities to work part time should were work disabled had damage more often. Although damage
support adults with childhood-onset chronic illnesses to remain on its own hardly affected HRQOL in the CHILL-NL cohort,
employed.3 we speculate that specific damage may affect work disability and
Work disability in the CHILL-NL cohort was very high thereby HRQOL. For example, cerebral infarction is more likely
compared to the general population. Although the majority of to affect the capacity to work than having cataract. However, our
the patients with work disability did not have paid employment, study was underpowered to perform subanalyses on damage type
several had a paid job. No studies of work disability in adults and association with work disability and/or HRQOL.
with cSLE are available. In a systematic review of 26 studies The number of patients who were not aware or not inter-
in aSLE with a mean disease duration of up to 14 years, work ested in the study was unknown. All included patients were
disability was estimated to be 34%, which is lower than the cSLE survivors; patients with current high disease activity and/
51% in the CHILL-NL cohort.41 Several risk factors affecting or damage may have found the study too taxing to participate
work disability have been identified in aSLE, such as presence in. Our results might be an underrepresentation of the severity
of damage, specifically neuropsychiatric and musculoskeletal of cSLE and its effect on education and work participation.46,47
damage.40,44,45 Indeed, in our cohort, damage and neuropsychi- A selection bias toward patients with a high level of education
atric damage was more prevalent in patients with work disability. cannot be excluded. As higher educational levels have been asso-
Patients without paid employment had lower HRQOL, ciated with higher employment rates,12 it is possible that our
which is also seen in patients with aSLE.15,40 Employment status results are an underrepresentation of unemployed adults with

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Groot, et al: cSLE education and employment 921

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cSLE. Although all data were verified with clinical records, it 7. Abdul-Sattar A, Magd SA, Negm MG. Associates of school
is possible that information was missed as data were collected impairment in Egyptian patients with juvenile idiopathic arthritis:
retrospectively. In the questionnaires, we asked whether SLE Sharkia Governorate. Rheumatol Int 2014;34:35-42.
8. Minden K, Niewerth M, Listing J, Biedermann T, Bollow M,
affected education, vocation, and employment, and if yes, we
Schontube M, et al. Long-term outcome in patients with juvenile
asked for the reason in an open-ended question. We did not idiopathic arthritis. Arthritis Rheum 2002;46:2392-401.
specifically ask for other (confounding) factors that could influ- 9. Peterson LS, Mason T, Nelson AM, O’Fallon WM, Gabriel SE.
ence employment and education outcomes besides SLE. Psychosocial outcomes and health status of adults who have had
This is a cross-sectional study in which data regarding juvenile rheumatoid arthritis: a controlled, population-based study.
employment were limited to current work status. Prior studies Arthritis Rheum 1997;40:2235-40.
have demonstrated that patients with SLE move in and out of 10. Planbureau C. Relation educational level and job availability (relatie
opleidingsniveau en arbeidsaanbod). In: Education CaSO, Cultuur
work based on their disease status,44 which cannot be assessed for
en Wetenschap, editor; 2012.
patients with cSLE in this study. The intended follow-up of this 11. Schlichtiger J, Haas JP, Barth S, Bisdorff B, Hager L, Michels H, et
cohort will help our understanding of the employment status of al. Education and employment in patients with juvenile idiopathic
patients with cSLE over time. arthritis - a standardized comparison to the German general
The percentage of inhabitants of the Netherlands with a population. Pediatr Rheumatol Online J 2017;15:45.
non-Western background is 13%,23 which is lower than the 27% 12. Malviya A, Rushton SP, Foster HE, Ferris CM, Hanson H,
found in our cohort. Our study was underpowered to assess the Muthumayandi K, et al. The relationships between adult
effect of ethnicity on educational and vocational achievements. juvenile idiopathic arthritis and employment. Arthritis Rheum
2012;64:3016-24.
The statistical tests were performed without correction for
13. Almehed K, Carlsten H, Forsblad-d’Elia H. Health-related quality
multiple testing, so it is possible that some significant results of life in systemic lupus erythematosus and its association with
may be due to chance. Additionally, our study lacked power to disease and work disability. Scand J Rheumatol 2010;39:58-62.
perform regression analysis to adjust for possible confounders 14. Campbell R Jr, Cooper GS, Gilkeson GS. The impact of systemic
and to assess predictors of disability and unemployment. lupus erythematosus on employment. J Rheumatol 2009;36:2470-5.
Despite the large perceived effect of cSLE on education, 15. Utset TO, Baskaran A, Segal BM, Trupin L, Ogale S, Herberich E,
academic achievements in adults with cSLE were similar et al. Work disability, lost productivity and associated risk factors
in patients diagnosed with systemic lupus erythematosus. Lupus Sci
compared to the general population. Although vocational
Med 2015;2:e000058.
choices were often adjusted due to the effects of the disease, 44% 16. Moorthy LN, Baldino ME, Kurra V, Puwar D, Llanos A, Peterson
of patients did not have a paid job. A high percentage of patients MG, et al; International SMILEY Collaborative group. Relationship
(51%) were work disabled, which was related to not having paid between health-related quality of life, disease activity and disease
employment and the presence of damage, specifically neuropsy- damage in a prospective international multicenter cohort of
chiatric damage. Employed patients had a higher HRQOL, but childhood onset systemic lupus erythematosus patients. Lupus
being work disabled outweighed the positive effect of employ- 2017;26:255-65.
ment on HRQOL. Ongoing support to help patients find suit- 17. Brunner HI, Higgins GC, Wiers K, Lapidus SK, Olson JC, Onel
K, et al. Health-related quality of life and its relationship to patient
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potential adjustments during their career is necessary, to facili- J Rheumatol 2009;36:1536-45.
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