Bilaga 5 – Nordic protocol for neuropsychological follow-up of children treated for brain tumor – revision 2023
Pediatric brain tumor is a rare and heterogeneous disease and neurocognitive sequelae are common, which makes standardized neuropsychological follow-up and collaborative data collection crucial.
This is a common Nordic Test protocol, developed and agreed upon by Nordic neuropsychologists working with children with cancer. The protocol is updated continuously and is in line with the recommendations from the SIOP-Europe brain tumor working group.1,2
This protocol is recommended for all children, diagnosed with a brain tumor at age 0-18 years, regardless of type and grade of tumor, or any related syndromes.* Neuropsychological assessment is recommended at diagnosis, two, and five years after diagnosis (+/- 3 months). Individual rehabilitation needs often require further assessments, e.g., earlier than 2 years post-diagnosis, into teenage years, or at school transitions. The core battery is a minimum, and extended assessment is most often required to design rehabilitation interventions and to fully map the individual’s neurocognitive profile. Recording of obtained data in national registries (when available) is recommended. Tests can be administered digitally or in a paper-pencil-version.
This protocol, or an abbreviated version of it, could also be used for survivors of non-CNS childhood cancer at risk for neurocognitive sequelae, i.e., survivors treated with cranial radiation therapy, total body irradiation, stem cell transplant, or intrathecal or high-dose intravenous methotrexate.3
|
Domain |
Core battery (0 to 18 years) |
Age span (years) |
Supplementary list |
|
Motor speed |
|
|
Grooved Pegboard (from age 5) or other pegboard test |
|
Processing speed |
Wechsler Coding (age- appropriate Wechsler-test) |
4–18 |
|
|
Wechsler Symbol Search (age- appropriate Wechsler-test) |
4–18 |
|
|
|
Verbal skills |
Wechsler Vocabulary (age- appropriate Wechsler-test) |
4–18 |
|
|
Wechsler Similarities (age- appropriate Wechsler-test) |
4–18 |
|
|
|
WPPSI Picture Naming/Bayley expressive language |
0–4 |
|
|
|
WPPSI Receptive Vocabulary/Bayley receptive language |
0–4 |
|
|
|
Fluid intelligence/ spatial perceptual intelligence |
Wechsler Matrix (age- appropriate Wechsler-test) |
4–18 |
|
|
Wechsler Block Design (age- appropriate Wechsler-test) |
2.5–18 |
|
|
|
Working memory |
Digit span (age-appropriate Wechsler-test) |
6–18 |
Wechsler Picture Memory (from age 2.5) |
|
Visual-motor integration |
Beery-Buktenica VMI 6, |
2–18 |
|
|
Sustained attention |
Conner’s CPT III |
8–18 |
|
|
Executive function |
D-Kefs TMT |
8–18 |
D-Kefs Color Word, Tower |
|
Memory |
|
|
Word list (Nepsy, Rey Auditory Verbal Learning Test, California Verbal Learning Test) |
|
General cognitive ability |
|
|
Bayley Scales of Infant Development Cognitive Index |
*Children with brain tumors due to Neurofibromatosis (NF) or Tuberous sclerosis (TS) are included if/when also diagnosed with brain tumor. Children with spinal tumors are excluded, except if the tumors are infiltrating the medulla.
|
Questionnaires |
Core battery (2 to 18 years) |
|
Health related quality of life |
PedsQL generic core scale and multidimensional fatigue scale or PROMIS Scales generic and fatigue scales. Proxy and self-report (when available) |
|
Executive function: |
3–18 years: Behavior Rating Inventory of Executive Function |
- Limond J, Thomas S, Bull KS, et al: Quality of survival assessment in European childhood brain tumour trials, for children below the age of 5 years. Eur J Paediatr Neurol 25:59-67, 2020
- Limond JA, Bull KS, Calaminus G, et al: Quality of survival assessment in European childhood brain tumour trials, for children aged 5 years and over. Eur J Paediatr Neurol 19:202-10, 2015
- Nathan PC, Patel SK, Dilley K, et al: Guidelines for identification of, advocacy for, and intervention in neurocognitive problems in survivors of childhood cancer: a report from the Children's Oncology Group. Arch Pediatr Adolesc Med 161:798-806, 2007