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
MoDIDol intervention: Multidisciplinary mobile intervention system specialising in pain management for patients with moderate to severe intellectual development disorders, isolated or associated with ASD or multiple disabilities.
Treatment recommendations, pain assessment, training in scales, follow-up consultations every 6 weeks for 6 months, continued if the situation is not resolved, call at 12 months.
Study summary
Pain is described by patients with a Neurodevelopmental Disorder (NDD), including Autism Spectrum Disorder (ASD), Intellectual Development Disorder (IDD) or multiple disabilities, and the family as one of the main associated disorders; its management is also one of the main concerns of families and professionals. At present, there is no validated and tested pain management system in populations facing complex pain situations. In response to the lack of a pain management services, a multi-disciplinary mobile team was set up in September 2022 at the Brest University Hospital (Mobile Pain Handicap Team Intellectual Disability 0-25 years; MoDIDol). This team offers a specific protocol for the assessment and management of pain that takes into account the social and family environment, the living context and the clinical characteristics of patients (children, adolescents and young adults (0-25 years) with IDD, ASD or multiple disabilities). The team includes at least one paediatrician specialising in the assessment and treatment of pain and a nurse, and travels to patients' usual living environments.
Eligibility
Sex
ALL
Min age
—
Max age
24 Years
Healthy volunteers
No
Inclusion Criteria:
* Aged from birth up to 24 years inclusive (i.e., under 25 years old)
* Medical diagnosis of intellectual disability (ID), isolated or associated with autism spectrum disorder (ASD), developmental disorder (DD), or profound multiple disabilities, based on international classification systems (ICD-11 or DSM-5)
* Confirmed probable or definite pain diagnosis, as validated by the MoDIDol team
* PGIC score ≥ 3
* Living in or receiving care in the departments of Finistère, Côtes-d'Armor, or Morbihan
* Written informed consent provided by parents, legal guardians, or holders of parental authority, authorizing data collection for research and publication purposes
* Affiliated with or benefiting from a French national health insurance scheme
Exclusion Criteria:
* More than three places of residence and/or care settings
* Parents or legal guardians who do not have sufficient language or comprehension skills to provide informed consent or complete study questionnaires
Primary outcome measure(s)
Global Clinical Improvement at 6 months — From baseline to the end of 6 months of treatment with the MoDIDol system, assessed up to 6 months (T3) The primary outcome is the patient's global clinical improvement as perceived by family caregivers and/or institutional professionals, using the Patient Global Impression of Change (PGIC) scale after 6 months of care provided by the MoDIDol team. Improvement is defined as a PGIC score of 1 or 2 out of 7. scale from 1 to 7, higher scores mean worse outcome.
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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