Article

AIM: To develop and validate a disease-specific parent proxy and child quality of
life (QoL) measure for patients aged 2 to 18 years surviving cerebral sinovenous
thrombosis (CSVT) and arterial ischaemic stroke (AIS).
METHOD: Utilizing
qualitative and quantitative methods, we developed a 75-item Pediatric Stroke
Quality of Life Measure (PSQLM) questionnaire. We mailed the PSQLM and a
standardized generic QoL measure, Pediatric Quality of Life Inventory (PedsQL),
to 353 families. Stroke type, age at stroke, and neurological outcome on the
Pediatric Stroke Outcome Measure were documented. We calculated the internal
consistency, validity, and reliability of the PSQLM. RESULTS: The response rate
was 29%, yielding a sample of 101 patients (mean age 9y 9mo [SD 4.30]; 69 AIS
[68.3%], 32 CSVT [31.7%]). The internal consistency of the PSQLM was high
(Cronbach's alpha=0.94-0.97). Construct validity for the PSQLM was moderately
strong (r=0.3-0.4; p<0.003) and, as expected, correlation with the PedsQL was
moderate, suggesting the PSQLM operationalizes QoL distinct from the PedsQL.
Test-retest reliability at 2 weeks was very good (intraclass correlation
coefficient [ICC] 0.85-0.95; 95% confidence interval 0.83-0.97) and good
agreement was established between parent and child report (ICC 0.63-0.76).
INTERPRETATION: The PSQLM demonstrates sound psychometric properties. Further
research will seek to increase its clinical utility by reducing length and
establishing responsiveness for descriptive and longitudinal evaluative
assessment. WHAT THIS PAPER ADDS: A pediatric stroke-specific quality of life
(QoL) measurement tool for assessments based on perceptions of importance and
satisfaction. Moderate-to-high reliability and validity established for a new
clinical scale evaluating QoL among children with stroke. Perceived QoL measured
using the Pediatric Stroke Quality of Life Measure appears lower in children with
neurological impairment.
CI - (c) 2018 Mac Keith Press.

Langue : ANGLAIS