Adapting two pain assessment tools for young people with cerebral palsy: a multi-stakeholder consensus study

Abstract

Introduction: Cerebral palsy (CP) is the most common cause of childhood physical disability. Chronic pain is a common comorbidity of CP; however, holistic pain assessment is challenging due to few available self-report tools for people with CP and diverse cognitive, communication, and functional abilities. Previous research has identified 2 tools for potential use in CP (Fear of Pain Questionnaire for Children-Short Form [FOPQ-C-SF] and Modified Brief Pain Inventory [mBPI]), along with potential modifications.

Objectives: To gain consensus on modifications required to the FOPQ-C-SF and mBPI for use with children and young people with CP and chronic pain.

Methods: A 2-round modified electronic Delphi study with people with lived experience (n = 19 and 16) and clinicians (n = 25 and 21) was conducted. Ethics was obtained through the Women's and Children's Health Network Human Research Ethics Committee (2022/HRE00154). A total of 37 modification suggestions to the FOPQ-C-SF and mBPI were rated on a 5-point Likert scale (strongly agree to strongly disagree). Consensus was determined as ≥75% of participants rating the suggestion as strongly agree/agree, or strongly disagree/disagree.

Results: Seven modifications reached consensus for inclusion in the FOPQ-C-SF and 21 for the mBPI. No modifications reached consensus for exclusion for either tool. Modifications primarily focused on refining wording, enhancing visual representation of the tool for improved understanding and reducing the number of response options.

Conclusion: Consensus has been reached on modifications to the FOPQ-C-SF and mBPI for young people with cerebral palsy. Future research will examine the comprehensibility of the adapted tools across the population.

Keywords: Assessment; Cerebral palsy; Chronic pain; Patient-reported outcome measures.