A vignette study to explore the developmental trajectory of pain in young adults with Down syndrome, autism and learning disability of no known aetiology

Young adults (YA) with neurodivergences and/or learning disabilities (LD – Down syndrome, autism and learning disability of no known aetiology) are more likely to experience acute and chronic pain than their typically developing counterparts (Breau et al., 2003; Emerson & Bursch, 2020; Noyek et al., 2024; Petigas & Newman, 2021; Pinals et al., 2021). Adolescent pain services in the United Kingdom (UK) estimate that 14% of patients are autistic (Lipsker et al., 2018), which echoes findings reported in the United States (Han et al., 2024). This is important because pain experienced during the transition to young adulthood may may be associated with entrenched pain-related disability (Murray et al., 2020). This co-occurrence of pain and autism is higher than would be expected, as ~2% of the general population are autistic (Chiarotti & Venerosi, 2020). Reasons for this higher than expected epidemiology of pain are unclear; however, some evidence suggests an association between neurodivergence and differential pain processing (Bogdanova et al., 2022). Nevertheless, it is unlikely that increased pain in LD populations is attributable to altered processing alone, and other factors, such as co-occurring mental health challenges and poorer experiences of healthcare in these populations, may also play an influential role (Adams & Turk, 2015; Stone et al., 2024).

Pain studies for YA with LD lack attention to social and psychological components of pain (Noyek et al., 2024), despite evidence in other populations of the importance of anxiety, depression and catastrophising in the development of pain related disability (Moore, 2024; Palermo, 2020) and recognition that addressing these factors is an essential component of interventions for pain (Palermo, 2020). Further, gold standard interventions for pain employ cognitive behavioural therapy, which addresses the cognitions associated with the pain experience (Jensen et al., 2018); however, little research has been conducted on pain related cognitions in those with LD (Bogdanova et al., 2022). Without an understanding of cognition around pain and other factors influencing pain in this population there is a lack of evidence from which to design interventions for pain in this population (Barney et al., 2020; Bogdanova et al., 2022). Therefore, this study seeks to identify factors associated with the development of pain in YA with LD to inform the development of appropriate interventions.