NeuroPAIN app: Usefulness of a mobile pain application evaluation system for children with cerebral palsy.

Objectives: Children with cerebral palsy (CP) can experience a substantial amount of pain. Effective pain management hinges on precise and prompt assessment. We designed a mobile-based application NeuroPAIN app to monitor pain among children with CP. NeuroPAIN app allowed parents to record pain symptoms, pain duration, and rate the perceived pain their child was facing. We evaluated the usefulness of NeuroPAIN app in pain recognition and monitoring among Malaysian parents of children with bilateral CP.

Method: Prospective cohort study of all parents of children with bilateral non-ambulant CP who owned Android devices. NeuroPAIN app was installed in all participants. At 3-month follow-up, data of the NeuroPAIN app was analyzed and participants were given a feedback questionnaire to complete.

Results: Total of 60 parents participated in the study (child's median age 7 years, interquartile range 4-8.75 years). The vast majority (95 %) of parents reported pain in their children. Children with assisted tube feeding was associated with reported increased pain frequency. Majority (77 %) felt it was easy to navigate the NeuroPAIN app. Two-thirds regularly tracked their child's pain using the app over a 2-month period. Parents of children with prolonged periods of pain ≥25 s were associated with reduced app usage.

Conclusion: Majority of Malaysian children with bilateral CP often experience pain particularly among those with assisted tube feeding highlighting the importance for clinicians to be vigilant in monitoring pain among these children. Prolonged pain periods among children with CP may lead to parental fatigue in monitoring pain through the NeuoPAIN app.