OA02 Paediatric chronic pain and Autism Spectrum Disorder: is there a link?

Abstract Introduction/Background To review the literature on chronic pain and autism spectrum disorder (ASD). A key aim is to explore the prevalence of chronic pain in children with ASD and the impact that ASD could have on the experience of chronic pain. Description/Method After reviewing the literature, a thematic analysis was completed in order to identify key patterns. The thematic analysis identified four key topics: Prevalence of chronic pain in ASD; Impact of comorbid ASD and chronic pain; Psychological flexibility; Sensory sensitivities. Discussion/Results The literature demonstrates that the prevalence of chronic pain is higher in children with ASD than the general population; studies show the prevalence of pain to be almost doubled in children with ASD (ASD = 15.6%; without ASD = 8.2%). Chronic pain can also have a more significant impact on functioning in children who exhibit ASD traits, shown through higher pain interference, higher depression levels and lower health related quality of life. This greater functional impairment means interventions are particularly important, however, challenges are highlighted by the literature; ASD traits may affect the efficacy of talking therapies and treatment guidelines are not specific, such as those for comorbid ASD and anxiety not being intended for use with physical health conditions. An important protective factor identified in comorbid chronic pain and ASD is psychological flexibility; acting on long-term values rather than current thoughts and feelings. However, this is typically low in ASD thus highlighting a role for Acceptance and Commitment Therapy (ACT), which aims to increase psychological flexibility. This is supported in chronic pain research where ACT leads to improved functioning, particularly in those with higher ASD traits. A discrepancy exists in chronic pain literature as there is a higher prevalence of children with clinically significant ASD traits than with confirmed ASD diagnosis. It appears that medically unexplained pain can interfere with ASD diagnosis, with it often being the first presenting symptom in undiagnosed ASD, and oversensitivity to pain has been associated with delayed ASD diagnosis. Sensory and perceptual abnormalities are commonly seen in ASD, with research indicating an underlying link between hypersensitivity and pain. However, current pain sensitivity findings can often not be generalised to children with comorbid chronic pain and ASD; studies tend to exclude those with such physical health conditions and investigate only acute pain sensitivity in ASD. Key learning points/Conclusion There is a link between chronic pain and ASD evident in the literature as children with ASD are at a higher risk of developing chronic pain than the general population, particularly if they also experience abnormal or hypersensitivities. Chronic pain is likely to have a greater impact on children with ASD, including higher depression levels and lower quality of life. Due to the risk for greater functional impairment, it is particularly important to manage chronic pain in children with ASD, however common ASD traits and a lack of specific guidelines pose challenges in doing so. Due to a lack of existing research, further research is required to gain understanding of the link between chronic pain and ASD, including exploring sensory abnormalities in chronic pain and the management of comorbid chronic pain and ASD. It is important raise awareness of this association amongst clinicians, particularly due to the prevalence of undiagnosed ASD, the impact on intervention, and the risk for more severe functional impairment in paediatric chronic pain.

Introduction/Background: Chronic pain is persistent pain lasting more than three months, impacting many aspects of a person's life. 20-30% of UK adolescents experience chronic pain (although studies vary greatly). The previous pathway through our service was unclear, which meant young people were not accessing all available resources or being seen promptly. We aimed to create a model that optimised available resources, including local networks and ensured equitable access to our service across the region. We wanted to target critical barriers such as mental health, school attendance and sleep, and delivering asset-based care. Description/Method: We followed the "plan, do, study, act" PDSA cycle for this quality improvement project (QIP). The initial evaluation involved multidisciplinary team (MDT) meetings, site visits, and the MDT experience using other models of care. Patient cases were reviewed for weaknesses in existing models. Discussions highlighted the need to match resources to needs instead of a "onesize-fits-all" approach. Changes include creating our own "model" for Chronic Pain, introducing a specialist physiotherapy Triage Clinic to the pathway, converting our Pain Education Workshop (PEW) to virtual and utilising local resources by expanding our network. PEW seeks to empower patients and families to understand their pain. It is also offered to local healthcare professionals to increase confidence in supporting patients. We adapted the Thrive Mental Health Model to create a Triaged Model for Chronic Pain. We needed to streamline the service, as some patients became lost within the original pathway, not attending PEW and being on long waiting lists. We needed to manage difficulties faced with an increased patient cohort and case complexity, including mental health. Feedback demonstrated some patients found it difficult coming to MDT appointments without knowing who would be present. Triage Clinic helped to mitigate this. Young people with a lower level of need can be assessed virtually, have symptoms validated, receive advice and be discharged to appropriate care. Those with pain not managed by this reassurance are assessed within our service including, One-Stop-Shop, Adolescent Clinic for Rheumatology patients and Biomechanical clinic. Those requiring more support are referred to the MDT for intervention and education for serial day-case rehabilitation or more intensive intervention (PRIME). Ongoing challenges, such as severe mental health difficulties, mean some may not be ready to access support. We liaise with local services such as CAMHS, and patients may be reintroduced to the team later if appropriate. Discussion/Results: Our model showed improved outcomes compared to our previous service. We looked at data from 2018-2019 and 2021, removing the years involving the initial waves of the pandemic as the service adapted to the changes this brought. The physiotherapy Triage Clinic utilised our new Triage Model for the service. Following this we can discharge a portion of our patients to other services, some remain under the physiotherapy team, and the majority are seen in the Chronic Pain MDT clinic. It has been an opportunity, on initial consultation, to engage YP and their families and validate their pain. 22% of our patients had full school attendance on their initial review by our team. The average was a 59% attendance. There was an increase in 83% of those with initially reduced attendance following intervention with the chronic pain team. On average, attendance went from 44% to 71%.
services involved with young peoinvolved safeguarding teams, allied teams. In 2018 on average, 1.4 sed to 1.8 in 2019 and 2.4 in 2021.
ity of the cases we see or due to increasingly show more specific g targets year on year, from 53% in their plan in 2021. over the past three years of the staff, including 43 local physiotheraour team in supporting the young people and their parents in our care. The Evelina team aims to lead regional meetings and communities of practice. Key learning points/Conclusion: With the limited available resources, our team is continuing to work towards managing a complex cohort of patients successfully. We were shortlisted for a British Society of Rheumatology Award for Best Practice following the changes made within our department. This QIP and our new model can be adapted to many other specialities and teams. Changes we have made are especially relevant following the impacts of the Covid-19 pandemic and continued pressure with reduced resources and increased demand. The virtual PEW allows for increased access for young people that previously struggled to attend face-to-face workshops in a timely fashion. The young people and their families benefit from improving their understanding of their pain and learning new strategies to manage it. Some patients find the virtual setting more practical as they miss less school and do not have to pay for costly transport to attend. Others miss the face-to-face interaction with peers who have similar difficulties. Both individual peer support and expert patients are areas we would like to explore as a service allowing the ripple effect of our model to continue. While improving the efficiency of some aspects of our service, we know that a further challenge is managing other 'bottle necks' created. From this conference, we hope our new model will be critically appraised and answer questions from our peers in other services. We look forward to learning from the experience of our colleagues who also work with this often complex cohort of patients. Introduction/Background: To review the literature on chronic pain and autism spectrum disorder (ASD). A key aim is to explore the prevalence of chronic pain in children with ASD and the impact that ASD could have on the experience of chronic pain. Description/Method: After reviewing the literature, a thematic analysis was completed in order to identify key patterns. The thematic analysis identified four key topics: Prevalence of chronic pain in ASD; Impact of comorbid ASD and chronic pain; Psychological flexibility; Sensory sensitivities. Discussion/Results: The literature demonstrates that the prevalence of chronic pain is higher in children with ASD than the general population; studies show the prevalence of pain to be almost doubled in children with ASD (ASD ¼ 15.6%; without ASD ¼ 8.2%). Chronic pain can also have a more significant impact on functioning in children who exhibit ASD traits, shown through higher pain interference, higher depression levels and lower health related quality of life. This greater functional impairment means interventions are particularly important, however, challenges are highlighted by the literature; ASD traits may affect the efficacy of talking therapies and treatment guidelines are not specific, such as those for comorbid ASD and anxiety not being intended for use with physical health conditions. An important protective factor identified in comorbid chronic pain and ASD is psychological flexibility; acting on long-term values rather than current thoughts and feelings. However, this is typically low in ASD thus highlighting a role for Acceptance and Commitment Therapy (ACT), which aims to increase psychological flexibility. This is supported in chronic pain research where ACT leads to improved functioning, particularly in those with higher ASD traits. A discrepancy exists in chronic pain literature as there is a higher prevalence of children with clinically significant ASD traits than with confirmed ASD diagnosis. It appears that medically unexplained pain can interfere with ASD diagnosis, with it often being the first presenting symptom in undiagnosed ASD, and oversensitivity to pain has been associated with delayed ASD diagnosis. Sensory and perceptual abnormalities are commonly seen in ASD, with research indicating an underlying link between hypersensitivity and pain. However, current pain sensitivity findings can often not be generalised to children with comorbid chronic pain and ASD; studies tend to exclude those with such physical health conditions and investigate only acute pain sensitivity in ASD. Key learning points/Conclusion: There is a link between chronic pain and ASD evident in the literature as children with ASD are at a higher risk of developing chronic pain than the general population, particularly if they also experience abnormal or hypersensitivities. Chronic pain is likely to have a greater impact on children with ASD, including higher depression levels and lower quality of life. Due to the risk for greater functional impairment, it is particularly important to manage chronic pain in children with ASD, however common ASD traits and a lack of specific guidelines pose challenges in doing so. Due to a lack of existing research, further research is required to gain understanding of the link between chronic pain and ASD, including exploring sensory abnormalities in chronic pain and the management of comorbid chronic pain and ASD. It is important raise awareness of this association amongst clinicians, particularly due to the prevalence of undiagnosed ASD, the impact on intervention, and the risk for more severe functional impairment in paediatric chronic pain.

Abstract citation ID: rkac066.003 OA03 "I CAN'T STAND THIS PAIN ANYMORE. PLEASE CHOP FOR AND
Bristol and tre for Pain Services, Bath, United Kingdom, and 3 Department of paediatric Rheumatology, The Royal Wolverhampton NHS Trust, Wolverhampton, United Kingdom Introduction/Background: Complex Regional Pain Syndrome (CRPS) is a chronic intensified localised pain condition. Symptoms may include limb pain, allodynia; hyperalgesia; swelling and/or changes in skin colour of the affected limb; dry, mottled skin; hyperhidrosis and trophic changes of the nails and hair. There is no known cure. Management involves analgesic medication and intensive multidisciplinary pain rehabilitation. Some cases however seem intractable, with little or no response to therapy. Some patients feel amputation of the affected limb is the only possible option. We present four cases of children and young adults requesting amputation for CRPS. Description/Method: Case 1: 13 years, CRPS left leg, with associated gross oedema, ulceration and high risk of sepsis. Case 2: 16 years, CRPS both feet and ankles, ulceration, fixed dystonic posturing bilaterally, Autistic Spectrum Disorder Case 3: 17 years, mild cerebral palsy affecting left side, passionate about sport, development of CRPS following surgery for tendon release right hip flexors, fixed flexion contractures at right hip and knee. Case 4:17 years, high functioning athlete, CRPS initially foot and ankle, contractures ankle, knee and hip; progression to involve other leg. In each of these cases, prolonged intensive therapeutic interventions have not been successful in restoring function or reducing pain. All have requested amputation of the affected limb(s). Discussion/Results: The tabloid press has reported the transforming success of amputation for some cases of CRPS, describing individuals who have had CRPS which has not responded to treatment finally having the affected limb amputated, and subsequently achieving great things -including winning medals in the Para-Olympics. Unsurprisingly such success stories provide hope for some enduring CRPS and becomes part of their 'evidence' for requesting amputation. The scientific literature however is sparce, and virtually non-existent in children and young people. The risks of ongoing pain in the stump; recurrence of CRPS in the amputated limb -or elsewhere; phantom limb pain and inability to tolerate a prosthesis are well documented in the adult literature that is available. Key learning points/Conclusion: Despite this, for the child/young person experiencing not only pain, but disgust, shame and body perception disturbance, the argument for amputation can be strong, and has to be considered. We present the evidence to date and share the complexity of such discussions, focusing on the experience gained from these cases.
Introduction/Background: Antiphospholipid syndrome (APS) is a rare autoimmune multisystem disease characterised by thrombosis and pregnancy morbidity in the presence of persistently elevated titres of: lupus anticoagulant, anticardiolipin and/or anti-glycoprotein 1. It may be primary (occurring alone) or secondary (in combination with another disease, most commonly systemic lupus erythematosus (SLE)). Recent publications highlighted clinical criteria limitations for children and raised awareness of the burden and prevalence of non-criteria manifestations in this population. This case report adds further weight to the need to raise multi-specialty awareness of non-criteria manifestations to aid recognition and treatment of this rare condition with potentially severe sequelae. Description/Method: 13-year-old female with SLE diagnosed aged 8 in India with bilateral optic neuritis occurring two months later. ANA positive at diagnosis with low complement and thrombocytopenia. Treated with prednisolone and hydroxychloroquine. Patient moved to the UK aged 9; initial abnormal bloods: mildly positive ANA (ENA negative), thrombocytopenia, strong lupus anticoagulant. As serology not strongly suggestive and optic neuritis rare in lupus diagnosis questioned. Ophthalmology review confirmed bilateral optic atrophy without evidence of previous vasculitis. There was debate whether the postretinal demyelination was due to antiphospholipid syndrome or a primary demyelinating condition. Hydroxychloroquine stopped and azathioprine started. Following normal neurology investigations (brain, spine MRI/MRV/MRA) concluded if patient developed new APSrelated symptoms or worsening visual evoked potentials anticoagulation would be discussed. Patient remained stable over four years with chronic thrombocytopenia and ESR persistently elevated. Azathioprine changed to Mycophenolate mofetil (MMF) due to side effects. Routine medication monitoring bloods in 2022 showed ESR 97, CRP 78, Platelets 61. Review identified vasculitic rash on soles of both feet with palpable nodules and normal pulses. Further investigation confirmed antiphospholipid antibody triple positivity. Aspirin commenced, hydroxychloroquine restarted, MMF dose increased and rituximab administered. Left foot rash settled but right progressed with toe discolouration and numbness. Skin biopsy considered but not performed due to skin integrity concerns. Foot pulses remained present and normal. Bilateral lower limb doppler reported as normal; increased symptoms resulted in CT angiogram which revealed bilateral non-occlusive popliteal thrombus and left pulmonary embolus. Subsequent echocardiogram was normal. Patient was anticoagulated with low molecular weight heparin followed by warfarin. Vascular surgical team advocated medical management and patient received seven infusions of Iloprost followed by Sildenafil. She achieved near total resolution of skin changes to toes with only minimal loss of skin over tip of right great toe. Patient will now require long-term anticoagulation. Discussion/Results: APS was considered in initial differential diagnosis but patient did not meet current clinical criteria as no past evidence of thrombosis. Lupus anticoagulant was consistently strongly positive and anticardiolipin repeatedly negative. As anti-B2 glycoprotein 1 antibody is not routinely tested and must be verbally requested, it was only checked once (negative) prior to discovery of triple positivity. ANA reported as strongly positive at time of SLE diagnosis but reviewing original notes from India titre was 1:100 and therefore not highly convincing. ENA negative and complement and white cell count normal