Assessing pain in children with autism spectrum disorders: findings from a preliminary validation study

Assessing pain in children with autism spectrum disorders (ASDs) can be extremely challenging, since many cannot self-report pain. This study aims to test the validity of the Non-Communicating Children's Pain Checklist - Revised (NCCPC-R) in identifying pain in children and adolescents affected by ASDs.

A two-phase validation study based on (a) the translation and cultural adaptation of the NCCPC-R to Italian and to ASD-specific needs and context; and (b) the validation of a modified, 32-item version of the NCCPC-R. In all, 141 carers of children aged 6-16 years with ASDs were asked to recall an in-pain episode and a not-in-pain episode of their child and to rate on a 3-point scale (0 = not at all, 3 = very often) each behaviour included in the tool. Internal consistency (Cronbach's α), explorative and confirmative factorial structure, as well as concurrent and discriminant validity, were all assessed.

Confirmatory factor analysis established the revised version of the NCCPC-R for children with ASDs (named = NCCPC-R_ASD ), formed from 10 of the original 30 items categorised into three factors ('Changing in mood', 'Increasing in tension' and 'Alerting reaction') to have an acceptable level of reliability. The tool was internally consistent (α = 0.741 during in-pain episodes, α = 0.790 during not-in-pain episodes) and was able to discriminate between in-pain episodes (13.36 out of 40; CI 95% 12.34-14.39) and not-in-pain episodes (7.84 out of 40; CI 95% 6.86-8.82, p < 0.001).

These results provide preliminary evidence that the 10-item version of the NCCPC-R_ASD is a reliable and valid tool for assessing pain in children with ASD.