Assessment of pain in children with cerebral palsy focused on translation and clinical feasibility of the revised FLACC score

AbstractBackground and aims Assessment of pain in children with cognitive impairment (CI) including cerebral palsy (CP) is difficult. Several pain assessment tools have been developed and validated for use in children with CI. The revised Face, Legs, Activity, Cry and Consolability score (r-FLACC) includes core behaviours of children with CI and adds an open-ended descriptor for individualisation (5 items assigned 0–2 points, total range 0–10). Other pain assessment tools including individual pain behaviours are the Individualised Numeric Rating Scale (INRS) and the Paediatric Pain Profile (PPP). Both the Noncommunicating Childrens's Pain Checklist – Postoperative version (NCCPC-PV) and the Echelle Douleur Enfant San Salvador (DESS) are developed from core pain behaviours for children with CI but have no possibility for individualisation. For successful clinical application a pain assessment tool should not only be reliable and valid, but also clinically feasible. The aim of this study was to select the most valid and feasible pain assessment tool for children with CI and translate that tool into Danish. Methods A literature review on studies on pain, pain assessment tools, feasibility and CI was performed. Studies were evaluated with focus on children with CI not able to self-report pain and the r-FLACC was chosen for translation. A 10 step translation process guideline was used from the Translation and Cultural Adaptation Group, which describes preparation, forward translation, reconciliation, back translation, back translation review, harmonization, cognitive debriefing, review of cognitive debriefing, finalisation, proofreading, and final report. Results Studies show that the r-FLACC is superior regarding clinical feasibility. The r-FLACC is a useful tool for assessing pain in children with CI due to its ease to use in a clinical setting and its use of both core and individual pain behaviours. In the back translation review discrepancies of words between the original and the back-translated English versions were assessed and in three of nine discrepancies a word was changed. In the cognitive debriefing no issues were found regarding understandability, interpretation or cultural relevance of the translation. No other language translations of the r-FLACC score have been published; hence the harmonisation step with a comparison of the English back translations was not possible. Conclusions The r-FLACC is assessed to have the most preferable profile with use of core pain behaviours, flexibility regarding individualisation, good psychometric properties, and high clinical feasibility; hence suited for use in Danish children with CP. A Danish version of the r-FLACC score now exits and may be used in a clinical setting for the assessment of pain. Implications It is important for health-care professionals to be able to assess pain in hospitalized children with CP who are not able to self-report. The r-FLACC score is clinically feasible and has the potential for becoming the gold standard of pain assessments in children with CP. A standardised approach to pain assessment may lead to an increased focus on pain and help improve the treatment of pain in children with CP in Denmark.