Academic outcomes in childhood‐onset systemic lupus erythematosus

Zelko, Frank; Beebe, Dean W.; Baker, Aimee A.; Nelson, Shannen; Ali, Aisha; Cedeno, Adlin; Dina, Blair; Klein‐Gitelman, Marisa S.; Ying, Jun; Brunner, Hermine I.

doi:10.1002/acr.21681

Cited by 26 publications

(24 citation statements)

References 21 publications

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“…English was the native language for the 40 cSLE patients and 40 controls matched for sex, school grade, and age (within 1 year of age of index patient with cSLE), with sociodemographic details and information about cSLE status provided elsewhere (13) and online (Supplementary Table 2, available in the online version of this article at http://onlinelibrary.wiley.com/doi/10.1002/acr.21835/abstract).…”

Section: Resultsmentioning

confidence: 99%

“…No potential controls needed to be excluded from participation by these criteria. The patients' medical records were reviewed for cSLE‐relevant parameters, and additional information about the study population is provided elsewhere (13). To study the reproducibility (also known as test–retest reliability) of the Ped‐ANAM, study participants completed the test twice during the first study visit.…”

Section: Methodsmentioning

confidence: 99%

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Validation of the Pediatric Automated Neuropsychological Assessment Metrics in childhood‐onset systemic lupus erythematosus

Brunner

Klein‐Gitelman

Zelko

et al. 2013

Arthritis Care & Research

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Objective To evaluate the reproducibility and validity of the Pediatric Automated Neuropsychological Assessment Metrics (Ped-ANAM) when used in childhood-onset systemic lupus erythematosus (cSLE). Methods Forty children with cSLE and 40 matched controls were followed for up to 18 months. Formal neuropsychological testing at baseline was repeated after 18 months of follow-up; overall cognitive performance and domain-specific cognition (attention, working memory, processing speed and visuoconstructional ability) were measured and categorized as having normal cognition, mild/moderate or moderate/severe impairment. The 10 Ped-ANAM subtests were completed every 6 months and twice at baseline. Ped-ANAM performance was based on accuracy (AC), mean time to correct response (MNc), throughput, and coefficient of variation of the time required for a correct response (CVc) as a measure of response consistency. Results Particularly MNc scores demonstrated moderate to substantial reproducibility (intraclass correlation coefficients: 0.47-0.80). Means of select Ped-ANAM scores (MNc, AC, CVc) differed significantly between children with different levels of cognitive performance and allowed for the detection of moderate or severe cognitive impairment with 100% sensitivity and 86% specificity. Six Ped-ANAM subtests significantly correlated with the change in overall cognitive function in cSLE (baseline vs. 18 month; Spearman correlation coefficient > ±0.4; p<0.05, n=24). Conclusions The Ped-ANAM has moderate to substantial reproducibility, criterion and construct validity and may be responsive to change in cSLE. Additional research is required to confirm the Ped-ANAM's outstanding accuracy in identifying cognitive impairment and its usefulness in detecting clinically relevant changes in cognition over time.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Validation of the Pediatric Automated Neuropsychological Assessment Metrics in childhood‐onset systemic lupus erythematosus

Brunner

Klein‐Gitelman

Zelko

et al. 2013

Arthritis Care & Research

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“…Grading schemes vary, and academic knowledge (assessed via formal tests) is only indirectly related to day-to-day functioning. 22 With the goal of assessing day-to-day performance at school, we measured the overlapping constructs of school competency and school-related quality of life (QOL). School competency was assessed by the Child Behavior Checklist (CBCL), which queries parents on the child’s typical grades (using a standardized metric) and the need for educational supports.…”

Section: Methodsmentioning

confidence: 99%

Executive Functioning and School Performance among Pediatric Survivors of Complex Congenital Heart Disease

Gerstle

Beebe

Drotar

et al. 2016

The Journal of Pediatrics

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Objective To investigate the presence and severity of real-world impairments in executive functioning– responsible for children’s regulatory skills (metacognition, behavioral regulation) – and its potential impact on school performance among pediatric survivors of complex congenital heart disease (CHD). Study design Survivors of complex CHD aged 8–16 years (n=143)and their parents/guardians from a regional CHD survivor registry participated (81% participation rate). Parents completed proxy measures of executive functioning, school competency, and school-related quality of life (QOL). Patients also completed a measure of school QOL and underwent IQ testing. Patients were categorized into two groups based on heart lesion complexity: two-ventricle or single-ventricle. Results Survivors of complex CHD performed significantly worse than norms for executive functioning, IQ, school competency, and school QOL. Metacognition was more severely affected than behavioral regulation, and metacognitive deficits were more often present in older children. Even after taking into account demographic factors, disease severity, and IQ, metacognition uniquely and strongly predicted poorer school performance. In exploratory analyses, patients with single-ventricle lesions were rated as having lower school competency and school QOL, and patients with two-ventricle lesions were rated as having poorer behavioral regulation. Conclusions Survivors of complex CHD experience greater executive functioning difficulties than healthy peers, with metacognition particularly impacted and particularly relevant for day-to-day school performance. Especially in older children, clinicians should watch for metacognitive deficits, such as problems with organization, planning, self-monitoring, and follow-through on tasks.

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“…Continued damage accrual through adulthood results in chronic medical problems (18,22), inferior academic outcomes (23), and disease-related absence from work (24) and may contribute to the comparatively higher unemployment rates among adult patients with pediatric-onset SLE (25).…”

Section: Introductionmentioning

confidence: 99%

Transition of Care and Health‐Related Outcomes in Pediatric‐Onset Systemic Lupus Erythematosus

Felsenstein

Reiff

Ramanathan

2015

Arthritis Care & Research

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Objective. Transition from pediatric to adult care is a complex process and can negatively impact patients with chronic disease. We describe the transition experience of patients with pediatric-onset systemic lupus erythematosus (SLE) and its associated outcomes in adulthood. Methods. A telephone survey of 41 pediatric-onset SLE patients was conducted following their transition to adult care. Data on medical and social outcomes during and after the transition were collected. Health status was compared to retrospectively collected baseline data at pediatric discharge.Results. The mean 6 SD followup interval was 5 6 3.7 years; the mean 6 SD age at followup was 24 6 4.2 years. More than half of patients (22 of 41) experienced transition difficulties, primarily due to loss of insurance and emotional readjustment, which were associated with poor symptom control (P 5 0.03) and multiple organ system involvement (P 5 0.05) at followup. After the transition, most patients (35 of 41) were followed by an adult-care rheumatologist, and the majority (37 of 41) reported recent symptoms of active disease; 41% (13 of 29) had developed symptoms suggestive of new renal manifestations following transition. One-third (15 of 41) reported new or ongoing neuropsychiatric symptoms. Both renal and neuropsychiatric manifestations were associated with unemployment (P < 0.05). Direct referral by a pediatric rheumatologist was associated with fewer hospitalizations following transition (P 5 0.04). Conclusion. The majority of patients transitioned successfully to adult rheumatologic care. Major challenges were loss of insurance and attachment to pediatric providers, highlighting the importance of a structured transition process that focuses on providing emotional and financial guidance. Disease activity in pediatric-onset SLE remains high throughout adulthood, with morbidity primarily related to renal and neuropsychiatric manifestations.

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Academic outcomes in childhood‐onset systemic lupus erythematosus

Cited by 26 publications

References 21 publications

Validation of the Pediatric Automated Neuropsychological Assessment Metrics in childhood‐onset systemic lupus erythematosus

Validation of the Pediatric Automated Neuropsychological Assessment Metrics in childhood‐onset systemic lupus erythematosus

Executive Functioning and School Performance among Pediatric Survivors of Complex Congenital Heart Disease

Transition of Care and Health‐Related Outcomes in Pediatric‐Onset Systemic Lupus Erythematosus

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