Mobile Pain Disability Intellectual Disability Team 0-25 years (MoDIDol): an innovative approach that has been bringing together children, families and professionals for the past year.

Pain in disabled children with moderate to severe intellectual disabilities is considered under-diagnosed and under-treated due to difficulties in communicating pain through oral language. The difficulty of assessment is accentuated when patients are taken out of their usual environment. Therapeutic proposals are a matter for expert opinion. Prescriptions are often not followed up, due to travel constraints for both the child and pain professionals, which hinders the adaptation of treatments and the advancement of knowledge. Since September 2022, a mobile team has been dedicated to pain management for children, adolescents and young adults with moderate or severe intellectual disabilities in Western Brittany. The team offers: (1) an initial consultation with patients in their living environment: medical/social or health facilities, sometimes the home, in the presence of parents and usual professionals. An initial multidimensional assessment of pain leads to recommendations and prescriptions for medication or non-medication management; (2) follow-up by teleconsultation with family and institutional referents in order to assess the relevance and effectiveness of recommendations and prescriptions, and to adjust them; (3) training in the assessment of pain in handicap situations for professionals in the establishments concerned; (4) training for parents in the assessment of their child’s pain in the form of seminars bringing together several parents. The active file over one year is 44 patients, most of them with multiple disabilities or severe autism. We carried out 38 initial consultations in institutions or at home, and 70 follow-up teleconsultations. Out of 44 files, 25 situations were identified as painful, 3 were described as non-painful, and 6 have been under evaluation since October 31, 2023. Twelve cases are currently closed: 3 were not managed, 5 were assessed as not painful, 4 were presented as painful with an adaptation of the assessment methods, and an adaptation of medication or non-medication treatments. Thirty-two cases are in progress, including 3 awaiting initial consultation. Specific assessment tools were used 13 times, and 15 patients benefited from investigative assessments. Twenty patients were offered non-drug treatments, and 22 were given analgesics or digestive drugs (laxatives, antacids). Proven or suspected aetiologies include migraines and other vascular complaints; digestive complaints (constipation, gastro-oesophageal reflux); neuropathic or nociplastic pain; fractures; muscular and dental pain. A total of 146 professionals were trained in 10 professional team training sessions in institutions, and over 500 in regional webinars. We trained 10 parents in 3 groups. The work of the MoDIDol team meets a need that we had underestimated. In the second year, the team doubled its working hours to make more time available for treatment and training, but also to rethink training for parents, structured around therapeutic education, and to initiate a research process.

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