Validation of a Care and Comfort Hypertonicity Questionnaire

Authors

  • Robin Nemer McCoy MD,

    1. Department of Pediatrics, Oregon Health and Science University
    Search for more papers by this author
  • Peter A Blasco MD,

    Corresponding author
    1. Department of Pediatrics, Oregon Health and Science University; and Shriners Hospital for Children-Portland
      * Correspondence to second author at Child Development and Rehabilitation Center, Oregon Health and Science University, 707 SW Gaines Road, Portland, Oregon, 97239 USA.
    Search for more papers by this author
  • Barry S Russman MD,

    1. Departments of Pediatrics and Neurology, Oregon Health and Science University; Pediatric Neurology, Shriners Hospital for Children- Portland, Oregon
    Search for more papers by this author
  • Jean P O'Malley MPH

    1. Neuroscience Institute, Oregon Health and Science University, Portland, Oregon, USA.
    Search for more papers by this author

* Correspondence to second author at Child Development and Rehabilitation Center, Oregon Health and Science University, 707 SW Gaines Road, Portland, Oregon, 97239 USA.

Abstract

The lack of evidence regarding functional and quality of life benefits resulting from tone reduction with intrathecal baclofen (ITB) infusion treatment relates to the lack of validated and responsive measures. We integrated our scale/questionnaire, developed from chart review, with the non-validated Caregiver Questionnaire (CQ) to yield a final document, the Care and Comfort Hypertonicity Questionnaire (CCHQ). Convergent validity was achieved by administering the CCHQ to 47 patients with spastic/dystonic cerebral palsy (CP) who were being evaluated for tone management. The population studied included 18 females and 29 males (mean age 10y [SD 4y 10mo]; range 3y 1mo–21y 1mo). Twenty-five patients were subsequently referred for botulinum toxin (BTX-A) injections (mean Gross Motor Function Classification System [GMFCS] 3.2); 11 patients were referred for ITB (mean GMFCS 4.4); four were referred for orthopedic surgery (mean GMFCS 3.3); 3 were referred for selective dorsal rhizotomy (mean GMFCS 2.7); one was recommended for oral baclofen (GMFCS 5); and three were recommended for no treatment (mean GMFCS 3.7). Blinded to the score, those with the highest scores (severe hypertonicity) were recommended for ITB; those with the lowest scores were recommended for BTX-A injections. Responsiveness of the CCHQ was established by administering the questionnaire to patients who already had an implanted ITB pump. The children with the largest dose increase demonstrated a statistically significant improvement in the CCHQ score. This scale can be used to document the efficacy or treating severe hypertonicity both in clinical and research protocols.

List of abbreviations:
CCHQ

Care and Comfort Hypertonicity Questionnaire

CHQ

Child Health Questionnaire

CQ

Caregiver Questionnaire

ITB

Intrathecal baclofen

OM

Oral medications

OS

Orthopedic surgery

SDR

Selective dorsal rhizotomy

WeeFIM

Functional independence measure for children

Ancillary