USING QUESTIONNAIRE DESIGN TO EXPLORE REPORTING DIFFERENCES FOR SPASTICITY RELATED PAIN IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY

Author(s)

Quintanar-Solares M*1;Martin ML1;Bryant AJ1;Ascoytia CM1;Asmus F2, Geister TL2 1Health Research Associates, Inc., Seattle, WA, USA, 2Merz Pharmaceuticals GmbH, Frankfurt, Germany

OBJECTIVES: To utilize a specific approach in questionnaire design (general to specific items) to identify evidences of existing (but initially denied) spasticity-related pain (SRP) in children with Cerebral Palsy (CP). METHODS: Children and adolescents with CP and SRP and their parent/caregivers participated in qualitative interviews to evaluate the Questionnaire on Pain Caused by Spasticity (QPS), a newly developed Patient Reported and Observer Reported Outcome measure that assesses SRP.  Interviews were audio recorded and transcribed.  Child/adolescent questionnaires were compared with the one from their corresponding parent/caregiver’s to identify differences in answers provided for presence of SRP.  Questions first asked about SRP in general, and then in specific activity situations (at rest, during usual daily activities, during active mobilization, and during physically difficult activities). RESULTS: Eight children and adolescents (7-16 years) who participated with their parent/caregivers were used for this evaluation. Clinicians confirmed at enrollment that all subjects had SRP weekly to daily. Four of the 8 participants reported having no pain on the initial general SRP item, yet proceeded to describe their pain in subsequent items that asked about severity of pain in specific activity situations.  Parent/caregiver responses indicated observation of signs of their child’s pain on both the general item and the various activity situations.  CONCLUSIONS: Because earlier qualitative interview data documented instances where children and adolescents reported intentionally hiding their pain from their parent/caregivers, there is a concern that self-reported pain data may not be trustworthy in this population.  However, these findings suggest that combining a self-reported and an observer-reported assessment produces complimentary results that facilitate more accurate measurement of SRP.  Results also suggest that in the assessment of chronic conditions, structuring child/adolescent questionnaires to make multiple (general to descriptive) inquiries of the same concept might facilitate discovery of symptoms being initially denied.

Conference/Value in Health Info

2013-05, ISPOR 2013, New Orleans, LA, USA

Value in Health, Vol. 16, No. 3 (May 2013)

Code

PRM155

Topic

Economic Evaluation, Methodological & Statistical Research

Topic Subcategory

Cost-comparison, Effectiveness, Utility, Benefit Analysis, PRO & Related Methods

Disease

Neurological Disorders, Pediatrics, Respiratory-Related Disorders, Systemic Disorders/Conditions

Explore Related HEOR by Topic


Your browser is out-of-date

ISPOR recommends that you update your browser for more security, speed and the best experience on ispor.org. Update my browser now

×