Chronic pain assessment for young people with cerebral palsy: Moving beyond pain intensity

Despite the high prevalence of chronic pain in people with cerebral palsy (CP), assessment using a biopsychosocial framework, which is considered the criterion standard in other populations, is not routinely applied in clinical practice.1 A lack of standardization of pain assessment and limited use of appropriate tools has contributed to pain being both under-identified and poorly treated in this population. Schiariti et al., on behalf of the National Institute of Neurological Disorders and Stroke (NINDS) Cerebral Palsy Common Data Elements (CDE) Oversight Committee, recently updated the NINDS CP CDEs, which were developed in 2015.2 This is a move towards addressing the need to assess the multidimensional impact of chronic pain on the lives of young people and their families. The recommended tools have been mapped to the International Classification of Functioning, Disability and Health (https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health) framework, which is useful to ensure that chronic pain assessment moves beyond the body structure and function level. While the recommended tools are helpful to guide the chronic pain assessment of young people with CP, there is a significant gap because they do not capture one of the core elements of a biopsychosocial approach to chronic pain assessment. This limitation, as Schiariti et al. state, is due to the lack of tools that assess the impact of chronic pain on emotional functioning, despite pain coping being considered the most significant behavioural contribution to the adjustment and outcomes of chronic pain.3 Pain intensity as a means of measuring chronic pain in people with CP can be problematic. Schiariti et al. recommend assessment of pain intensity; however, these tools only capture a snap shot in time, and therefore do not fully capture the chronic pain experience.4 The recommendation of tools that capture the impact of chronic pain on activity and participation is important; however, several existing tools were not included or listed as excluded tools. Notably, the modified Brief Pain Inventory was not included but has been used to capture pain interference in young people with CP who are unable to self-report.5 Authentic consumer engagement in research is considered best practice. While the authors posted the recommended set of CP pain CDEs on the NINDS CDE website for public review, the CDEs were not developed in partnership with consumers. It is unclear if consumers had any input into the final tools recommended, which might impact uptake and implementation in clinical practice. Despite some limitations, the authors have clearly helped to advance the understanding and application of pain assessment in children and young people with CP. This will ensure that young people with CP can be referred for timely and effective pain management to reduce the impact that pain may have on activity and participation. Data sharing is not applicable to this article as no new data were created or analyzed in this study.