Measurement instruments for the early detection of unilateral cerebral palsy and evaluation of bimanual performance

Infants with early brain lesions are at risk of developing unilateral cerebral palsy (CP) and valid and reliable measurement instruments for their early detection as well as evaluation of their bimanual performance at later age are needed. Such identification allows for early family support and intervention, while evaluation of hand function at later ages enables to tackle primary challenges children and adolescents with unilateral CP face continuously while performing everyday activities that require the use of both hands. This thesis focuses on two measurement instruments, the Hand Assessment for Infants (HAI) and the Children’s Hand-use Experience Questionnaire (CHEQ), as applied to infants at risk of developing unilateral CP and children and adolescents with this condition, respectively. The overall aim was to determine the validity of HAI scores to predict unilateral CP and the ability of the CHEQ scores to capture perceptions of bimanual performance, both at a single point in time and over time, in comparison to other assessments serving as external criteria.

The HAI is the first standardized test designed to evaluate both uni- and bimanual functions in infants from 3-12 months of age at risk of developing unilateral CP. In combination with neonatal magnetic resonance imaging, and considerations of gestational age and sex, the HAI can predict unilateral CP in infants with asymmetric perinatal brain injury as young as 3.5-4.5 months of age. In addition, HAI scores exhibit very good to excellent overall accuracy in predicting the development of unilateral CP in infants at risk at various time-points from 3.5-12 months of age. Impaired hand function presents a continuous challenge when performing daily activities requiring the use of both hands, especially as children with unilateral CP grow older. The CHEQ, is an online patient-reported questionnaire of how children and adolescents with unilateral hand impairment experience the use of the affected hand in connection with activities requiring both hands. The AHA is a standardized test based on observation of the use of the affected hand by children with unilateral CP during bimanual activities. The CHEQ and the AHA were found to measure different constructs that are only related to a minor extent, emphasizing the need to utilize both of these complementary tools to obtain a more complete picture of the perceived and observed performance of bimanual activities by children and adolescents with unilateral CP. The CHEQ scores captured some change in perceived bimanual performance, with good accuracy for the scale feeling bothered, but only limited accuracy for the scales grasp efficacy and time utilization. Consequently, CHEQ scores can be recommended primarily for describing perceived bimanual performance.

List of scientific papers

I. Early prediction of unilateral cerebral palsy in infants with asymmetric perinatal brain injury – model development and internal validation. Ryll UC*, Wagenaar N*, Verhage CH, Blennow M, de Vries LS, Eliasson AC. Eur J Paediatr Neurol. 2019;23(4):621-628. *The first and second author contributed equally to this work.
https://doi.org/10.1016/j.ejpn.2019.04.004

II. Predictive validity of the Hand Assessment for Infants (HAI) in infants at risk of unilateral cerebral palsy. Ryll UC, Krumlinde-Sundholm L, Verhage CH, Sicola E, Sgandurra G, Bastiaenen CHG, Eliasson AC. [Submitted]

III. Assisting Hand Assessment (AHA) and Children’s Hand-use Experience Questionnaire (CHEQ): observed versus perceived bimanual performance in children with unilateral cerebral palsy. Ryll UC, Bastiaenen CHG, Eliasson AC. Phys Occup Ther Pediatr. 2017;37(2):199-209.
https://doi.org/10.1080/01942638.2016.1185498

IV. To explore the validity of change scores of the Children’s Hand-use Experience Questionnaire (CHEQ) performance in children with unilateral cerebral palsy. Ryll UC, Eliasson AC, Bastiaenen CHG, Green D. Phys Occup Ther Pediatr. 2019;39(2):168-180.
https://doi.org/10.1080/01942638.2018.1438554