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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Objective

To compare educational and vocational outcomes among adults with childhood-onset systemic lupus erythematosus (SLE) and adult-onset SLE.

Methods

We used data derived from the 2002–2010 cycles of the Lupus Outcomes Study, a longitudinal cohort of 1,204 adult subjects with SLE. Subjects ages 18–60 years living in the US (n = 929) were included in the analysis and were classified as childhood-onset SLE if age at diagnosis was <18 years (n = 115). Logistic regression was used to assess the unadjusted and adjusted effect of childhood-onset SLE, sex, race/ethnicity, baseline age, urban or rural location, and US region on the likelihood of completing a bachelor's degree. Generalized estimating equations were used to assess the effect of childhood-onset SLE, demographics, education, and disease-related factors on the odds of employment, accounting for multiple observations over the study period.

Results

Subjects with childhood-onset SLE were on average younger (mean ± SD 29 ± 10 years versus 44 ± 9 years), with longer disease duration (mean ± SD 15 ± 10 years versus 11 ± 8 years). Subjects with adult-onset SLE and childhood-onset SLE subjects were equally likely to complete a bachelor's degree. However, subjects with childhood-onset SLE were significantly less likely to be employed, independent of demographic and disease characteristics (odds ratio 0.62, 95% confidence interval 0.42–0.91).

Conclusion

While subjects with SLE are just as likely as those with adult-onset SLE to complete college education, childhood-onset SLE significantly increases the risk of not working in adulthood, even when controlling for disease and demographic factors. Exploring reasons for low rates of employment and providing vocational support may be important to maximize long-term functional outcomes in patients with childhood-onset SLE.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

The prognosis for children diagnosed with systemic lupus erythematosus (SLE) has improved dramatically over the past several decades ([1-4]), with estimated 5-year survival rates increasing from <50% to >95% ([5]). This is believed to be due to earlier diagnosis, improvements in therapy, and multidisciplinary care. As more children with SLE survive into adulthood, long-term educational and vocational outcomes become increasingly important.

Longitudinal studies of adults with various childhood-onset chronic illnesses suggest that these individuals are at risk for poorer educational attainment and lower rates of employment, leading to lower rates of insurance coverage and poorer access to care ([6, 7]). Recent data from the National Longitudinal Study of Adolescent Health suggest that while young adults with childhood cancer, heart disease, diabetes mellitus, or epilepsy are equally likely to marry, live independently, and be engaged in romantic relationships as compared to their healthy peers, their vocational outcomes are poorer. Adults with childhood-onset chronic illness are less likely to graduate from college, less likely to be employed, and more likely to receive public assistance. Their mean income is also significantly lower ([8, 9]).

Little is known about the long-term educational and vocational outcomes of adults with childhood-onset SLE. One small, retrospective study assessed 64 young adult subjects, of whom 88% had completed high school and 55% had gone on to enroll in or complete college ([10]). Twenty-five percent were employed full time, and more than 70% lived in a household with total annual income below $30,000. However, followup was variable (range 1–26 years, mean 13.6 years) and complete data were only available on 29 of the original 64 patients included in the study.

Studies of social and vocational outcomes among young adults with juvenile idiopathic arthritis (JIA), the most common rheumatic disease of childhood, show a more mixed picture. Multiple studies suggest that educational outcomes are equivalent between young adults with JIA and their healthy peers. Studies comparing JIA patients in their late teens and early twenties with healthy peers have shown similar employment outcomes ([11-13]), but studies focusing on older populations have found higher rates of unemployment among subjects with JIA ([14-17]). This may reflect recent improvements in therapy that have successfully decreased disability among the younger generation of JIA patients, while disability may have significantly impacted employment status among older adults with JIA. Additionally, outcomes may differ significantly between JIA and lupus patients due to differences in disease manifestations, demographics, and long-term health outcomes.

The primary objective of this study was to compare educational and vocational outcomes among adults with childhood-onset SLE and adult-onset SLE, using data from the University of California, San Francisco (UCSF) Lupus Outcomes Study (LOS). We anticipated that individuals with childhood-onset SLE would have worse outcomes than those with adult-onset SLE, and that these outcomes would be associated with greater disease morbidity and minority race/ethnicity. Better understanding of what modifies vocational attainment will allow us to tailor interventions to maximize vocational and educational outcomes.

Box 1. Significance & Innovations

  • This is the first large, prospective study to assess long-term educational and vocational outcomes among adults with childhood-onset systemic lupus erythematosus (SLE).
  • This study found that while adults with childhood-onset SLE are as likely to complete a bachelor's degree as those with adult-onset SLE, they are less likely to be employed, independent of demographic and disease characteristics.
  • These findings suggest that current programs may be successful in helping children and young adults with lupus to succeed in the educational arena, but additional supports may be needed to promote vocational success in adulthood.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Data source

The study cohort consisted of 1,204 individuals participating in the 2002–2010 interviews of the LOS, an ongoing longitudinal survey of persons with SLE from the US. Details regarding eligibility and enrollment of participants have been described elsewhere ([18]). Briefly, subjects previously enrolled in the UCSF Lupus Genetics Project ([19]) were invited to enroll in the LOS. The genetics study participants had been recruited from both clinical and community-based sources nationwide: 25% from UCSF-associated clinics, 11% from non-UCSF rheumatology offices, and 64% from various community-based sources (e.g., lupus support groups, conferences, newsletters, and web sites). All participants had a confirmed diagnosis of SLE according to chart review supervised by a rheumatologist. Subjects participated in annual structured telephone interviews conducted by trained interviewers. The survey included validated items pertaining to demographic and socioeconomic characteristics, SLE disease activity and manifestations, medications, general health, mental health, cognition, employment, health care utilization, and health insurance coverage. Few LOS subjects have been lost to followup, with an annual re-interview rate of 93%. The study protocol was approved by the UCSF Committee on Human Research.

Measures

The primary outcomes for this analysis were completion of a 4-year college degree and employment status. Subjects were defined as having completed a bachelor's degree if they reported having attained a bachelor's degree or higher in any interview of the LOS, even if they had not yet completed their education at baseline. Subjects were considered to be employed if they reported currently working, currently having a job but not working, or having performed any work for pay or profit in the past week. This definition is consistent with the Current Population Survey, the source of the nation's employment statistics ([20]). Employment status was classified at each interview. Individuals who were not employed were further classified as looking for work, keeping house, going to school, unable to work, retired, or other.

The primary predictor variable was childhood-onset SLE, defined as age at diagnosis <18 years. Additional disease-related predictor variables used in the employment analysis assessed disease duration, disease activity, renal damage, and physical function at baseline and all subsequent interviews. Disease activity was defined according to the Systemic Lupus Assessment Questionnaire (SLAQ), a validated self-report measure with possible scores ranging from 0 to 47 and higher scores representing increasing disease activity ([21]). Measures of renal damage included a history of dialysis or transplant. These self-report measures were validated in this cohort in a prior study via chart review of significant renal outcomes, including a history of biopsy findings, dialysis, and transplant, with high agreement observed (kappa coefficient >0.80) between self-reported outcomes and those documented in the medical record ([22]). They were included here because the SLAQ does not assess renal involvement. The Short Form 36 (SF-36) health survey scale of physical function (PF), a continuous 0–100 scale, was used to assess physical function, with increasing scores representing a higher level of function ([23]). Disease-related variables were measured at each observation.

Sociodemographic predictors included age, sex, race/ethnicity, rural or urban residence, and US region. Marital status and education were also included as predictors in the employment analysis. Race/ethnicity was categorized as white, African American, Hispanic/Latino, Asian/Pacific Islander, and other. In the multivariate analyses, race/ethnicity was dichotomized as white or nonwhite (including African American, Hispanic/Latino, Asian/Pacific Islander, and other). Rural and urban classification was defined according to previously described methodologies ([24]), and US region was defined as northeast, midwest, south, or west according to US Census classification. For employment analyses, education was defined as having attained a bachelor's degree or higher at the time of observation. Year of interview was also included as a predictor to account for temporal trends in employment.

Study sample

For the current analyses, we included data from all interviews from participants age <60 years and residing in the US at the time of the interview (n = 1,018). We excluded observations from subjects age >60 years at the time of interview in order to maximize age overlap between adult-onset SLE and childhood-onset SLE groups, as all subjects with childhood-onset SLE were age ≤60 years at the time of final followup. We excluded subjects who were residing outside the US at the time of interview, as country of residence would be expected to significantly impact employment and education outcomes. An additional 89 subjects (9%) were dropped for missing responses to key disease activity variables. These subjects were less likely to have attained a bachelor's degree and were more likely to have had dialysis than the retained subjects, but they did not differ in the proportion of childhood-onset disease. The final sample size was 929 subjects. For the analysis of educational attainment, we included a single observation for each subject. For the analysis of employment outcomes, which are subject to year-to-year variation, each participant could contribute observations from up to 9 interviews, for a total of 4,967 observations in the final analysis.

Statistical analysis

Baseline characteristics of the childhood-onset SLE and adult-onset SLE groups were summarized using means, medians, SDs, and proportions, and were compared with bivariate statistics (Student's t-test, rank sum test, and chi-square test), as appropriate.

For the analysis of educational attainment, we used logistic regression to assess the unadjusted and adjusted effect of childhood-onset SLE, sex, nonwhite race/ethnicity, baseline age, urban/rural residence, and US region on the likelihood of completing a bachelor's degree prior to or during the study. Disease-related covariates were not included in this analysis, as the majority of adult-onset SLE subjects are likely to have completed their education prior to onset of SLE.

For the longitudinal analysis of employment status, we calculated adjusted and unadjusted odds ratios (ORs) for employment across all 9 waves of the LOS, using generalized estimating equations to account for multiple observations contributed by the same individual. Childhood-onset SLE, race/ethnicity, and sex were included as fixed covariates. Time-varying predictors included year of interview, age, completion of a bachelor's degree, urban/rural residence, US region, history of dialysis, history of renal transplant, SLAQ score, and SF-36 PF score. To examine longitudinal patterns in childhood-onset SLE versus adult-onset SLE, we added an interaction term for year of interview and childhood-onset disease to the employment model. In addition, we calculated adjusted and unadjusted ORs for continuous employment across all LOS interviews among subjects with 2 or more interviews contributed.

We conducted several sensitivity analyses. In the models of educational attainment, we excluded 12 participants who were age <23 years at their final interview to account for subjects who may be too young to have completed a 4-year college degree. We also replaced age with year of birth to more carefully assess for a cohort effect of year of birth on educational attainment. For the analysis of employment status, we excluded 161 observations during which subjects reported being currently in school, which could decrease the likelihood of being employed. We also excluded 141 observations during which subjects reported being retired, as retired individuals may be receiving a pension and medical benefits that improve their standard of living and access to health care as compared to the nonretired unemployed. Finally, we conducted an analysis comparing only young adult subjects ages 25–35 years. All statistical analyses were performed using STATA software, version 11.0.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

Subject demographics

The study included 929 subjects with SLE between ages 18 and 60 years at baseline and residing in the US, including 115 (12%) subjects with childhood-onset SLE. The characteristics of childhood-onset SLE and adult-onset SLE subgroups at the time of the baseline LOS interview are described in Table 1. Subjects with childhood-onset SLE were on average younger, with more males (12% versus 6%; P = 0.02) and fewer white subjects (44% versus 62%; P < 0.001).

Table 1. Subject characteristics at baseline by age at SLE diagnosis in the Lupus Outcomes Study*
VariableChildhood-onset SLE (n = 115)Adult- onset SLE (n = 814)P
  1. Values are the number (percentage) unless indicated otherwise. SLE = systemic lupus erythematosus; NS = not significant; SLAQ = Systemic Lupus Activity Questionnaire; SF-36 = Short Form 36 health survey; PF = physical function scale.

  2. a

    Possible range 0–47.

  3. b

    Possible range 0–100.

Demographics   
Age, mean ± SD years29 ± 1044 ± 9< 0.001
Females101 (88)762 (94)0.02
Ethnicity  < 0.001
White51 (44)507 (62) 
Latino21 (18)74 (9) 
African American11 (10)97 (12) 
Asian21 (18)83 (10) 
Other11 (10)53 (7) 
Rural residence11 (10)72 (9)NS
US region  NS
Northeast9 (8)38 (5) 
Midwest6 (5)63 (8) 
South4 (3)67 (8) 
West96 (83)646 (79) 
Married43 (37)491 (60)< 0.001
SLE characteristics   
Age at diagnosis, median (range) years15 (2–17)32 (18–58)< 0.001
Disease duration, mean ± SD years15 ± 1011 ± 8< 0.001
History of dialysis20 (17)54 (7)< 0.001
History of renal transplant14 (12)33 (4)< 0.001
Disease activity   
SLAQ, mean ± SDa9 ± 813 ± 8< 0.001
General health status   
SF-36 PF, mean ± SDb48 ± 1039 ± 13< 0.001

Disease characteristics and functional status

There were significant differences in clinical characteristics between adult-onset SLE and childhood-onset SLE groups, consistent with previous analyses of the LOS ([22]). Subjects with childhood-onset SLE had a longer mean ± SD disease duration (15 ± 10 versus 11 ± 8 years), with disease duration ranging from 0–38 years in the adult-onset SLE group and 1–46 years in the childhood-onset SLE group. Subjects with childhood-onset SLE were also more impacted by renal disease, with a greater proportion requiring dialysis (17% versus 7%; P < 0.001) or a renal transplant (12% versus 4%; P < 0.001) at baseline, as well as prior to last followup. However, baseline disease activity as measured by the SLAQ was lower in childhood-onset SLE subjects (mean SLAQ score 9 versus 13; P < 0.001), and physical function was better (mean SF-36 PF score 48 versus 39; P < 0.001).

Education outcomes

At baseline there was no difference between adult-onset SLE and childhood-onset SLE groups in likelihood of having completed a bachelor's degree, but subjects with childhood-onset SLE were more likely to currently be enrolled in an educational program (Table 2). At the time of final interview there was a trend toward a difference in educational attainment between groups, with childhood-onset SLE subjects more likely to have completed a bachelor's degree (50% versus 41%; P = 0.09). In adjusted logistic regression analysis, subjects with childhood-onset SLE were marginally more likely to have completed a bachelor's degree at the time of final interview, but this difference was not statistically significant (OR 1.15, 95% confidence interval [95% CI] 0.72–1.82) (Table 3). Nonwhite subjects and female subjects were significantly less likely to have completed a bachelor's degree. Younger subjects were significantly more likely to have completed a bachelor's degree, with decreased odds of completing a degree for every increased year of age (OR 0.98, 95% CI 0.97–1.00), which is consistent with nationwide trends ([25]). Finally, subjects residing in the northeastern US were significantly more likely to have completed a bachelor's degree as compared to those residing in the south, midwest, or west, and subjects residing in rural regions were less likely to complete a bachelor's degree.

Table 2. Bivariate analysis of education at baseline by age at SLE diagnosis*
VariableChildhood-onset SLE (n = 115)Adult- onset SLE (n = 814)P
  1. Values are the number (percentage) unless indicated otherwise. SLE = systemic lupus erythematosus.

Highest level of education attained  0.03
Did not complete high school7 (6)29 (4) 
High-school degree25 (22)105 (13) 
Some college/trade school33 (29)200 (25) 
Associate or trade degree14 (12)150 (18) 
Bachelor's degree24 (21)208 (26) 
Postgraduate degree12 (10)122 (15) 
Currently in school23 (20)20 (2)< 0.001
Table 3. Odds ratios (ORs) for completing a bachelor's degree among subjects ages 18–60 years with SLE*
VariableUnadjusted OR for completing a bachelor's degree (95% CI)Adjusted OR for completing a bachelor's degree (95% CI)a
  1. SLE = systemic lupus erythematosus; 95% CI = 95% confidence interval.

  2. a

    Adjusted for childhood-onset SLE, sex, age, and ethnicity.

  3. b

    OR reported per year increase in age.

Childhood-onset SLE1.40 (0.95–2.07)1.15 (0.72–1.82)
Female0.59 (0.36–0.97)0.59 (0.35–0.98)
Ageb0.99 (0.97–1.00)0.98 (0.97–1.00)
Nonwhite ethnicity0.71 (0.54–0.92)0.63 (0.47–0.84)
Rural residence0.46 (0.28–0.77)0.45 (0.27–0.75)
US region  
WestReferentReferent
Northeast4.29 (2.19–8.41)3.85 (1.95–7.60)
Midwest1.2 (0.73–1.97)1.2 (0.73–2.04)
South0.90 (0.55–1.49)0.86 (0.51–1.45)

Since subjects who were age <23 years at the final interview were unlikely to have had the opportunity to complete a bachelor's degree, we conducted a sensitivity analysis to assess whether the effect of childhood-onset SLE on educational attainment was influenced by these younger subjects. When all subjects age <23 years at the final interview were dropped from the analysis (n = 12) there was still no significant difference in educational attainment between childhood-onset SLE and adult-onset SLE groups in adjusted analysis. Since subjects were interviewed over a period of 8 years, we replaced age with year of birth in the adjusted model in order to assess for cohort effect of year of birth on educational attainment. As expected, year of birth was a significant predictor of educational attainment (OR 1.02, 95% CI 1.00–1.03), but the effect of childhood-onset SLE on educational attainment remained nonsignificant (OR 1.10, 95% CI 0.69–1.73).

Employment outcomes

There was no difference in baseline employment status between groups in bivariate analysis, and at the final LOS interview all subjects reported some history of employment. However, unemployed subjects with childhood-onset SLE were significantly less likely to report being unable to work (15% versus 36%; P < 0.001) (Table 4).

Table 4. Bivariate analysis of baseline employment status by age at SLE diagnosis*
VariableChildhood-onset SLE (n = 115)Adult-onset SLE (n = 814)P
  1. Values are the number (percentage) unless indicated otherwise. SLE = systemic lupus erythematosus; NS = not significant.

Employed58 (50)417 (51)NS
Looking for work8 (7)18 (2)0.004
Keeping house7 (6)41 (5)NS
Going to school23 (20)20 (2)< 0.001
Unable to work17 (15)295 (36)< 0.001
Retired0 (0)18 (2)NS
Other2 (2)4 (0.5)NS
No response0 (0)1 (0.1)NS

In longitudinal multivariate analysis, subjects with childhood-onset SLE were significantly less likely to be employed as compared to those with adult-onset SLE (OR 0.62, 95% CI 0.42–0.91) (Table 5). Younger age, white ethnicity, completion of a bachelor's degree, lower disease activity score (SLAQ), and higher physical function score (SF-36 PF) were all statistically significant predictors of employment in adjusted analysis. Subjects with a history of dialysis were significantly less likely to be employed. Females were less likely than males to be employed in both unadjusted and adjusted analysis; however, this finding did not reach statistical significance. The OR for employment declined slightly with each interview year, although this did not reach statistical significance in the multivariate model. However, there was no significant interaction between year and childhood-onset SLE (P = 0.5; data not shown), indicating that the time trends for employment in childhood-onset SLE and adult-onset SLE did not differ.

Table 5. Odds ratios (ORs) for being employed among subjects ages 18–60 years with SLE*
VariableUnadjusted OR for being employed (95% CI)Adjusted OR for being employed (95% CI)a
  1. SLE = systemic lupus erythematosus; 95% CI = 95% confidence interval; SLAQ = Systemic Lupus Activity Questionnaire; SF-36 = Short Form 36 health survey; PF = physical function scale.

  2. a

    Adjusted for childhood-onset SLE, sex, age, ethnicity, education, interview year, history of dialysis, history of renal transplant, SLAQ score, and SF-36 PF score.

  3. b

    OR reported per year increase in age.

  4. c

    Completion of bachelor's degree.

  5. d

    OR reported per unit increase in SLAQ score, possible range 0–47.

  6. e

    OR reported per unit increase in SF-36 PF score, possible range 0–100.

Childhood-onset SLE1.19 (0.86–1.63)0.62 (0.42–0.91)
Female0.62 (0.39–0.97)0.80 (0.52–1.23)
Ageb0.97 (0.97–0.98)0.97 (0.96–0.98)
Nonwhite ethnicity0.77 (0.61–0.97)0.72 (0.56–0.92)
Rural residence0.79 (0.57–1.09)0.88 (0.64–1.21)
US region  
WestReferentReferent
Northeast1.09 (0.63–1.88)0.86 (0.48–1.55)
Midwest1.21 (0.76–1.90)1.31 (0.82–2.10)
South0.85 (0.61–1.18)0.86 (0.60–1.24)
Married1.05 (0.95–1.15)1.05 (0.93–1.19)
Educationc1.90 (1.59–2.27)1.84 (1.51–2.24)
Interview year0.98 (0.96–0.99)0.98 (0.96–1.01)
Dialysis0.75 (0.63–0.89)0.74 (0.56–0.96)
Transplant0.85 (0.69–1.05)1.01 (0.70–1.46)
Disease activity (SLAQ)d0.96 (0.95–0.97)0.98 (0.97–0.99)
Physical function (SF-36 PF)e1.04 (1.03–1.04)1.03 (1.03–1.04)

To evaluate the odds of continuous employment during all LOS interviews, we analyzed data for individuals in our cohort with 2 or more assessments of employment (n = 924) (Table 6). Individuals with childhood-onset SLE were significantly less likely to be continuously employed than those with adult-onset SLE (OR 0.58, 95% CI 0.35–0.98). Subjects with worse physical function at baseline, greater SLE activity at baseline, and need for dialysis during the followup period were also less likely to be continuously employed, whereas individuals with a college degree were more likely to be continuously employed.

Table 6. Odds ratios (ORs) for continuous employment across all LOS interviews among subjects ages 18–60 years with SLE*
VariableUnadjusted OR for continuous employment (95% CI)Adjusted OR for continuous employment (95% CI)a
  1. LOS = Lupus Outcomes Study; SLE = systemic lupus erythematosus; 95% CI = 95% confidence interval; SLAQ = Systemic Lupus Activity Questionnaire; SF-36 = Short Form 36 health survey; PF = physical function scale.

  2. a

    Adjusted for childhood-onset SLE, sex, age, ethnicity, baseline education, history of dialysis, history of renal transplant, baseline SLAQ score, and baseline SF-36 PF score.

  3. b

    OR reported per year increase in age.

  4. c

    Completion of bachelor's degree prior to baseline interview.

  5. d

    Baseline score; OR reported per unit increase in SLAQ score, possible range 0–47.

  6. e

    Baseline score; OR reported per unit increase in SF-36 PF score, possible range 0–100.

Childhood-onset SLE0.97 (0.64–1.48)0.58 (0.35–0.98)
Female0.59 (0.35–0.98)0.85 (0.48–1.49)
Ageb0.98 (0.97–1.00)0.99 (0.97–1.01)
Nonwhite ethnicity0.73 (0.55–0.97)0.82 (0.59–1.15)
Rural residence0.69 (0.42–1.15)0.91 (0.51–1.62)
US region  
WestReferentReferent
Northeast1.28 (0.70–2.35)0.87 (0.44–1.72)
Midwest1.10 (0.65–1.84)1.05 (0.58–1.88)
South1.26 (0.76–2.09)1.32 (0.74–2.34)
Married1.10 (0.83–1.45)0.97 (0.70–1.34)
Educationc2.63 (1.98–3.48)1.76 (1.28–2.41)
Dialysis0.58 (0.35–0.97)0.36 (0.15–0.86)
Transplant1.04 (0.61–1.76)1.57 (0.62–3.97)
Disease activity (SLAQ)d0.91 (0.89–0.93)0.96 (0.93–0.98)
Physical function (SF-36 PF)e1.07 (1.06–1.09)1.05 (1.03–1.07)

We hypothesized that a lower employment rate among subjects with childhood-onset SLE could be due to the fact that many of these subjects were still completing their education and had not yet entered the workforce. Therefore, we removed 161 observations during which subjects reporting currently being in school. In this sensitivity analysis, childhood-onset SLE remained an independent predictor of not being employed, although statistical significance was not achieved (OR 0.72, 95% CI 0.49–1.06). Finally, when observations of retired subjects and those who were currently in school were simultaneously dropped from the analysis, childhood-onset SLE was again an independent (although not statistically significant) predictor of not being employed (OR 0.77, 95% CI 0.52–1.14).

Since subjects with childhood-onset SLE in the LOS are on average younger, with less time to have become established in the work force, we hypothesized that their employment status may have been disproportionately affected by the recent recession. A May 2010 report by the United States Congress Joint Economic Committee, released near the end of our followup period, placed unemployment among young adults at a record 19.6% ([26]). Therefore, we conducted an additional sensitivity analysis comparing only young adult subjects ages 25–35 years, with the resulting data set containing 763 observations of 211 subjects. Again, the OR for employment among individuals with childhood-onset SLE remained stable, although statistical significance was not achieved with this smaller sample (OR 0.64, 95% CI 0.37–1.13).

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

SLE is a potentially life-threatening chronic illness with a waxing and waning course for which there is no cure. Nonetheless, due to advances in pediatric health care, the majority of individuals diagnosed with SLE in childhood now survive to adulthood. These adults face ongoing complications of chronic disease and its treatment, which may limit their ability to reach important social, educational, and vocational goals. Employment outcomes are particularly important for adults in the US, where employer-based health insurance remains the most prevalent means for financing health care among nondisabled adults ([27]). The aim of this study was to assess the effect of childhood-onset SLE on educational and workforce success as compared to subjects with adult-onset SLE.

The present study suggests that, among individuals with SLE, childhood-onset disease is an independent predictor of not being employed, regardless of demographic and disease characteristics. However, individuals with childhood-onset SLE are equally likely to complete college as compared to their peers with adult-onset SLE. Differences in employment between groups persisted even when subjects who were currently completing educational programs were removed from the analysis, and when only young adults with adult-onset SLE and childhood-onset SLE were compared. In addition, given the long disease duration of individuals with childhood-onset SLE in the LOS (mean 14.7 years), the patients with most severe disease may not have survived to entry in the study, creating a survivor effect that would bias our childhood-onset sample toward individuals with less severe disease. The finding that subjects with childhood-onset SLE in the LOS have lower disease activity scores and better physical function scores as compared to subjects with adult-onset SLE supports the hypothesis that individuals surviving to adulthood with childhood-onset SLE may have better overall functional status as compared to those with adult-onset SLE, in spite of the finding that they are less likely to be employed.

This is the first large, prospective longitudinal study to characterize long-term educational and vocational outcomes among adults with childhood-onset SLE. Previous studies of the LOS have shown that individuals with SLE experience higher rates of work loss and lower rates of work entry as compared to the general population ([28]), and are more likely to exit employment completely than to scale back to part-time employment ([18]). These differences may be exacerbated among individuals with childhood-onset disease, independent of disease manifestations. Lower rates of employment among individuals with childhood-onset chronic illness, as compared to those with adult-onset chronic illness or healthy peers, have also been documented in recent large studies ([8, 9]). It is possible that individuals with childhood-onset SLE are less likely to enter the workforce due to complications of their illness, whereas individuals who were successfully employed prior to onset of SLE are more likely to return to the workforce. This is supported by our observation in bivariate analysis that subjects with childhood-onset SLE were significantly less likely to have ever been employed at the end of study followup as compared to subjects with adult-onset SLE.

The greater success of individuals with childhood- onset SLE in completing college as compared to attaining employment is noteworthy. Good educational outcomes in the childhood-onset SLE group are unlikely to be due to cohort effect, since controlling for year of birth instead of age did not have any substantial effect on educational outcomes in childhood-onset SLE. Programs currently in place to support students with special health care needs, such as Section 504 of the Individuals with Disabilities Act and the Individuals with Disabilities Education Act, may provide sufficient support for individuals with childhood-onset SLE to succeed in their educational endeavors at a level comparable to their healthy peers. However, available programs may not provide adequate preparation for work entry for individuals with childhood-onset SLE. Preliminary data suggest that programs providing vocational training for students with JIA and other chronic illnesses may increase work entry ([29]). In addition, the workplace may not provide individuals with childhood-onset SLE the necessary flexibility to succeed, possibly due to lack of adequate time off during disease flares or inability to meet physical demands of the job. Additional vocational training and workplace support for adults with childhood-onset chronic illness may be important to maximize the productivity of these individuals and allow them to secure critical health insurance coverage.

This study has important limitations. First, the LOS is not a prospective inception cohort study, and therefore may be susceptible to selection bias. Subjects with childhood-onset SLE in our cohort have higher physical function scores and lower disease activity scores as compared to those with adult-onset SLE, in spite of the fact that individuals with childhood-onset SLE are known to be at greater risk for long-term disease damage and mortality ([30-33]). This suggests that, as compared to all individuals with childhood-onset SLE, subjects with childhood-onset SLE in the LOS may be biased toward those with less severe disease. However, the LOS is ideal for studying the late outcomes of a rare, chronic disorder. Second, since this study relies on subject self-reported outcomes, inaccuracies in reporting may occur. This limitation has been addressed in part by validating a subset of the self-reported outcomes through chart review.

In conclusion, while adults with childhood-onset SLE are as likely to complete a bachelor's degree as those with adult-onset SLE, they are less likely to be employed, independent of demographic and disease characteristics. There is a clear need to provide comprehensive support for children with childhood-onset SLE and other chronic rheumatic conditions as they enter adulthood, particularly interventions to support vocational readiness. Factors preventing adults with childhood-onset SLE from succeeding in the workplace merit further study, and can inform the development of successful vocational training programs. This study highlights the differences in vocational outcomes between adult-onset SLE and childhood-onset SLE, and suggests that interventions beyond traditional school-based programs are warranted.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. Dr. Lawson 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.

Study conception and design. Lawson, Hersh, Okumura, Yazdany, Yelin.

Acquisition of data. Lawson, Trupin, Yazdany, Yelin.

Analysis and interpretation of data. Lawson, Hersh, Trupin, von Scheven, Okumura, Yazdany, Yelin.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. REFERENCES
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