Parent-reported cognitive function is associated with leukoencephalopathy in children with brain tumors

Abstract

Purpose Cognitive dysfunction is a major concern for children with brain tumors. A valid, user-friendly screening tool could facilitate prompt referral for comprehensive neuropsychological assessments and therefore early intervention. Applications of the pediatric perceived cognitive function item bank (pedsPCF) such as computerized adaptive testing can potentially serve as such a tool given its brevity and user-friendly nature. This study aimed to evaluate whether pedsPCF was a valid indicator of cerebral compromise using the criterion of structural brain changes indicated by leukoencephalopathy grades. Methods Data from 99 children (mean age =12.6 years) with brain tumors and their parents were analyzed. Average time since diagnosis was 5.8 years; time since last treatment was 4.3 years. Leukoencephalopathy grade (range: 0–4) was based on white matter damage and degree of deep white matter volume loss shown on MRI. Parents of patients completed the pedsPCF. Scores were based on the US general population-based T-score metric (mean=50; standard deviation=10). Higher scores reflect better function. Results Leukoencephalopathy grade distributions were as follows: 36 grade 0; 27 grade 1; 22 grade 2; 13 grade 3, and 1 grade 4. The mean pedsPCF T-score was 48.3 (SD=8.3; range: 30.5 to 63.7). The pedsPCF scores significantly discriminated patients with different leukoencephalopathy grades, F=4.14, p=0.0084. Effect sizes ranged from 0.09 (grade 0 versus 1) to 1.22 (grade 0 versus 3 / 4). Conclusions This study demonstrates that the pedsPCF is a valid indicator of leukoencephalopathy and provides support for its use as a screening tool for more comprehensive neurocognitive testing.

Using the Patient‐Reported Outcomes Measurement Information System (PROMIS) to measure symptom burden reported by patients with brain tumors

“…Participants completed PROMIS anxiety , depression , fatigue , mobility , upper extremity function , peer relationships , and cognition (a.k.a., pediatric perceived cognitive function item bank, pedsPCF). Items included in these item banks were developed using PROMIS methodology, including literature review, focus groups with children and parents, drafting of items, cognitive interviews with children, and large‐scale data collection.…”

“…To measure cognition, a 10‐item short‐form was created by the study team based on the content and psychometric properties of items included in the cognition item bank. This short‐form was associated with the presence of leukoencephalopathy in children with brain tumors . As with other PROMIS CATs, cognition short‐form scores were reported as T‐scores relative to a general population mean of 50, with a standard deviation of 10.…”

“…18 We also included patients ages 18-22 (n = 15) to capture patients who were transitioning into adult clinics. The PROMIS items included in this study have been used to capture data from patients' ages [18][19][20][21][22][23][24][25] years, 19 supporting the inclusion of this age group. This article focuses on patients' perception of symptom burden, and thus data from the proxy version of the PROMIS measures are not reported here.…”

“…This short-form was associated with the presence of leukoencephalopathy in children with brain tumors. 25 As with other PROMIS CATs, cognition short-form scores were reported as T-scores relative to a general population mean of 50, with a standard deviation of 10. For anxiety, depression, and fatigue, higher scores represent greater symptom burden.…”

Pediatric Perceived Cognitive Functioning: Psychometric Properties and Normative Data of the Dutch Item Bank and Short Form

“…In the United States, the PedsPCF is used as a computerized adaptive test (CAT) or as a short-form questionnaire containing a selection of items. Short forms are currently available in English (Cella et al, 2016;Lai et al, 2017) and Spanish (Wong et al, 2015). The PedsPCF parent-report item bank showed satisfactory psychometric properties in a US general population sample .…”