Development of a programme of research to explore a developmental trajectory of pain in young adults with Down Syndrome, Autism and Learning Disability of No Known Aetiology

Development of a programme of research to explore a developmental trajectory of pain in young adults with Down Syndrome, Autism and Learning Disability of No Known Aetiology Research team: Dr Ellen M Henderson1[PI], Dr David Moore2, Dr Stephen Gallagher1, Prof Victoria Simms1 1 School of Psychology, Ulster University 2 School of Psychology, Liverpool John Moores University Hypotheses: H1- Factors associated with chronic pain can be mapped onto a comprehensive theory of chronic pain development, specific to young adults (YA) with learning disabilities (LD - Down Syndrome, Autism and Learning Disability if no know Aetiology). H2- Factors associated with early pain experiences will predict later chronic pain experiences for YA with LD. YA with LD are more likely to experience acute and chronic pain than their typically developing counterparts (1-5). Pain studies for YA with LD lacks attention to social and psychological components of pain (3), despite evidence in other populations of the importance of anxiety, depression and catastrophising in the development of pain related disability (6, 7) and recognition that addressing these factors is an essential component of interventions for pain (7). Previous research on developmental trajectories of pain development for YA without LD propose family, social and psychological factors play a role in development of pain later in life (see (8-10)). These trajectories have not been explored when development is atypical, as in the case of YA with LD. Further, as pain in early life is predictive of pain in adulthood across multiple pain types if not met with an appropriate early intervention (7), failure to understand pain development in this population means a research base which might be hindering development of comprehensive pain assessment tools and effective interventions, rather than improving pain for YA with LD. Method: Part 1 - A conceptual review (12) of existing research on the development of pain in LD populations [addressing H1] with specific attention to family, social and psychological factors associated with pain. Part 2 - a series of workshops with YA, carers and professionals to discuss and refine the results of the conceptual review and any advice we want to take forward into the next phase of the study. We believe working in partnership as a research team with research users is the most effective way to overcome issues leading to exclusion of YA with LD in previous research. Part 3 - a questionnaire given to YA with LD and their caregivers to explore factors implicated in the development of chronic pain (7) [addressing H2]. As the intention is to model how pain variables and vulnerabilities can predict later pain experiences, developmental trajectory modelling, (previously used successfully in studies in other domains (13)) will be used in analysis of Part 2. Expected outcome: Each part of the research will result in a publication, which together will outline, for the first time, the developmental trajectory of pain for YA with LD. This work will also be used to inform a funding application to the Pain Relief Foundation in November 2025 exploring how best to develop psychological interventions for pain in CYA with LD. Value of study to the learning disability community This research has the potential to significantly improve the lives of individuals with LD and those caring for them by: 1) Working with research users to address the gap in understanding pain development for YA with LD through comprehensively exploring social and psychological factors which give rise to pain. 2) Giving the pain management field an evidence-base to optimise methods for identifying and managing pain for YA with LD, as currently the evidence for pain management is considered suboptimal for this group (5, 14). 3) Identifying early intervention targets for pain which will allow for improvement of interventions designed to prevent development of chronic pain later in life for YA with LD. This study is timely as the International Association for the Study of Pain has recently revised their definition of pain (15), for inclusion of those with LD in pain research in a more meaningful way (16). This study will capitalise on that momentum by addressing the described gaps in the literature described above as a first step in development of a programme of pain research for YA with LD. References: 1. Breau LM, Camfield CS, McGrath PJ et al (2003) The incidence of pain in children with severe cognitive impairments. Arch Pediatr Adolesc Med 157(12):1219-1226 2. Emerson ND, Bursch B (2020) Communicating with Youth about Pain: Developmental Considerations. Children 7(10):184 3. Noyek S, Jessa JS, Faulkner V et al (2024) A systematic review of self and observer assessment of pain and related functioning in youth with brain-based developmental disabilities. Pain 165(3):523-536 4. Pinals DA, Hovermale L, Mauch D et al (2022) Persons with intellectual and developmental disabilities in the mental health system: part 1. Clinical considerations. Psychiatric Services 73(3):313-320 5. 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