Abstract

BackgroundThe Questionnaire on Pain caused by Spasticity (QPS) is a modular patient- and observer-reported outcome measure of spasticity-related pain (SRP) in children with cerebral palsy (CP). Originally developed for an English-speaking population, we conducted a psychometric validation of a recently developed Chinese language version of the QPS.MethodsThis was a prospective, observational study involving 137 children/adolescents with CP and upper and/or lower limb spasticity and their parents at three sites in China. Six QPS modules were used, three each for upper and lower limb SRP assessment: a patient self-report module; an interviewer-administered module used by site staff based on the cognitive, communicative, and motor abilities of a patient; and a parent/caregiver module administered for all children as an observer-reported outcome to complement the patient-reported outcome. If no assessment by the patient was possible because of age or cognitive impairments, only the parent/caregiver module was completed. Two visits with a 3-week interval provided data to evaluate and establish administrative ease of use, scoring of the QPS (factor analyses, Rasch analyses), reliability (Cronbach’s α, intraclass correlation coefficient), validity (correlations with quality of life [PedsQL™], motor impairment [Gross Motor Function Classification System, Gross Motor Function Measure-66, Manual Ability Classification System], and spasticity [Ashworth Scale, Modified Tardieu Scale]).ResultsFor most children, clinic staff reported no difficulties associated with general QPS use or deciding which module to use. Children (and parents) who reported more demanding activities also reported higher levels of associated SRP (or observed SRP behavior). Activity-related SRP items were combined for a total QPS score. Cronbach’s α was low for child self-report, but was acceptable for interviewer-administered and parent reports on SRP. Test–retest reliability was high for all modules. Moderate–strong associations were frequently seen between QPS and quality of life, and were particularly strong in the child self-report group. Relatively weak associations were observed between QPS and motor impairment and spasticity.ConclusionsThis first study was successful in providing initial evidence for the psychometric properties. Clinic staff were able to administer the QPS modules easily, and both children and parents were able to complete the designated QPS appropriately.

Highlights

  • The Questionnaire on Pain caused by Spasticity (QPS) is a modular patient- and observer-reported outcome measure of spasticity-related pain (SRP) in children with cerebral palsy (CP)

  • The Questionnaire on Pain caused by Spasticity (QPS) was developed to provide an innovative, standardized, patient-reported outcome (PRO) measure that could be used to describe SRP in a heterogeneous population with CP as described in a prior publication [15]

  • None of the children had missing QPS data and only a very small amount of QPS data were missing for the parents/caregivers

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Summary

Introduction

The Questionnaire on Pain caused by Spasticity (QPS) is a modular patient- and observer-reported outcome measure of spasticity-related pain (SRP) in children with cerebral palsy (CP). Pain in children and adolescents with cerebral palsy (CP) is common (14%–60%), but poorly understood, infrequently recognized and, often undertreated [1,2,3,4,5]. The high prevalence of pain in this patient population is associated with poor quality of life (QoL), with QoL scores typically low across all domains of the KIDSCREEN-52 health related QoL questionnaire [6,7,8]. One potential source of pain experienced by this population is spasticity-related pain (SRP). SRP can be continuous or recurrent and the incidence and severity of the pain may be affected by movement and different activities throughout the day (e.g., resting, walking, playing, or exercising) [1, 2, 13, 14]

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