A core outcome set to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy.

Abstract

Aim: To: (1) develop a core outcome set (COS) to assess chronic pain interference and impact on emotional functioning for children and young people with cerebral palsy (CP) with varying communication, cognitive, and functional abilities; (2) categorize the assessment tools according to reporting method or observer-reported outcome measures; and (3) categorize the content of tools in the COS according to the International Classification of Functioning, Disability and Health (ICF).

Method: A two-stage multi-stakeholder consensus process was used: stage 1 consisted of a workshop where 42 valid and reliable assessment tools were presented to 12 clinicians and six individuals with lived experience of CP to exclude tools considered not feasible; stage 2 consisted of a 2-round Delphi survey of 85 clinicians, researchers, and individuals with lived experience of CP to gain consensus on which tools to include. Included tools were mapped to the framework of the ICF.

Results: Twenty of 29 chronic pain assessment tools considered feasible reached 75% or greater consensus for inclusion in the COS. The tools were categorized according to reporting type: patient-reported or observer-reported; and their purpose: to identify the presence of chronic pain, to assess pain interference on activities of daily living, or to assess the impact on emotional functioning.

Interpretation: The developed COS guided the assessment of pain interference and impact on emotional functioning for children and young people with CP with a range of communication and cognitive abilities; the COS can be used to facilitate patient-centred care.