Study of a Mobile Team for Pain Management in Children and Young Adults With Intellectual Disability, Autism Spectrum Disorder, or Multiple Disabilities Up to 24 Years

What this Trial Is About

Pain is a major concern for children, adolescents, and young adults aged 0 to 25 years with Neurodevelopmental Disorders NDD such as Intellectual Developmental Disorder IDD, Autism Spectrum Disorder ASD, or multiple disabilities. These conditions often involve complex pain situations that are difficult to manage, and no validated pain management system currently addresses these needs comprehensively. The Mobile Pain Handicap Team Intellectual Disability MoDIDol was created at Brest University Hospital to provide a specialized, multidisciplinary approach to pain assessment and management in this population. The MoDIDol team includes a pediatrician specializing in pain and a nurse who visit patients in their usual living environments. The intervention involves parent education on pain assessment tools NCCPC and PPP, multidisciplinary follow-up consultations every 6 weeks for 6 months, and continued care if necessary, with a follow-up call at 12 months. Parents complete questionnaires at baseline, 3 months, and 6 months to help guide the treatment and measure progress. Participants and their families engage in regular consultations and complete questionnaires to assess pain intensity, behavior, quality of life, and parental stress over the 6-month treatment period. Interviews with parents and professionals occur at 6-month intervals to gain further insights. The main outcome is the global clinical improvement measured at 6 months, along with various secondary outcomes such as pain profiles, behavioral changes, sleep quality, and treatment determinants. The study also monitors pain mechanisms and treatment adjustments during follow-up.

Impact and Determinants of Success of a Mobile Multidisciplinary Intervention System Specialized in Pain Management for Patients With Moderate to Severe Intellectual Development Disorder, Isolated or Associated With an ASD or Multiple Disability