P08 A multi-disciplinary approach to treating young patients with Complex Regional Pain Syndrome (CRPS)

Abstract Introduction/Background The Rheumatology service provides outpatient assessment and rehabilitative intervention for CYP with inflammatory/non-inflammatory pain conditions across South London and Southeast England. CRPS remains poorly understood condition. Young people experience persistent severe and debilitating pain. The service receives approximately 20 referrals per annum, a figure increasing year-on-year. Early recognition and intervention is key for successful outcomes, but referrals to specialist services may be delayed months from onset of symptoms. No current national pathway to manage CRPS for paediatric patients. The team are aiming to identify “gold standard” intervention for CYP with CRPS, using existing models. matching resource to need. Description/Method Exact cause of CRPS unknown. Injury sometimes trigger, but not 1/10 cases. More common in women. 1.2/100,000 CYP (5-15 years old) in the UK; 15,000 new adult cases in adults pa (1 in 3,800). Diagnosis mainly clinical. No specific test confirms CRPS. Mainly based on symptoms and physical examination. Symptoms include: usually single limb, can be widespread pain (particularly allodynia), hypersensitivity, altered sensation skin changes around affected area, e.g. sensitive to touch, change in temperature swelling of limbs hair & nail growth functional impact increased sweating stiffness increased anxiety, lower mood, depression muscle weakness Difficult to treat – no single treatment available Duration of intervention varies from few weeks (mild cases) to indefinitely in some. CRPS can impact on activities of daily living, mobility, school attendance, sleep, mood. Early diagnosis and intervention is key. Imperative need for MDT approach; enables CYP to start to live alongside pain and develop control over their lives. CASE STUDY - 14F Past Medical History = DDH and Perthes of L hip; last surgery October 2020 (metalwork removed) 2021 - Presented with significant pain, numbness and restricted movement in left leg. Admitted locally for 6-day investigation. Labelled “very complex”. No improvement upon discharge. Limited mobility – using wheelchair Reduced school attendance (30%) Not wearing shoe/sock (left foot) Limited socialisation Affecting mood and mental well-being 2022 Referral to RhEve Attended ELCH One-Stop Clinic; met Rheumatologist Reassurance, understanding and validation + robust diagnosis of CRPS Referred to Physio/OT for intervention Seen within 1/52 by Physio/OT Repeated CRPS messages – ensured understanding; reassurance that team “know” how to treat; not complex for us! Focus not on “fixing” pain Use of breathing/distraction techniques; encouraged weight-bearing, movement, desensitisation and mobility Discussion/Results CASE STUDY INTERVENTION OUTCOMES [after one x 2 hour therapy session]: Touching own leg Noticed colour change in L leg/foot Actively started to move toes Took partial weight through L heel using crutches Negotiated stairs Reported to feel “confident” enough to be able to work on strategies at home Trialled wearing a soft shoe on her L foot Learnt breathing techniques and was able to use distraction Able to set some functional goals, e.g. school attendance, playing football, seeing friends From our extensive experience, we understand that: Intervention begins with the individual) - “Being healthy is more than just not being ill - it's about our physical, mental and emotional wellbeing” MDT approach is the most successful treatment for CRPS. This patient group demands a great deal of resource (e.g. clinics, inpatient admissions, therapy intervention time, liaison between ELCH and local teams) A confident, robust diagnosis is essential to support the young person and family in engaging with treatment intervention, moving from pre-contemplation to contemplation stage of change The CYP & their family must understand the diagnosis and show readiness for rehabilitation in order to move to the preparation stage of change Therapeutic intervention is most likely to be successful when the patient has engaged with treatment and has started to gain control of their symptoms, thereby moving from preparation towards action Our hypothesis is that by being aware of the stages of change and delivering interventions at the “correct” time the team can facilitate improved and quicker outcomes with the patient’s rehabilitation. Key learning points/Conclusion The young people that we see: Need confident & robust diagnoses delivered with empathy Benefit from time and space to process complex diagnoses Gain from continual opportunities for learning and asking questions Deserve to feel listened to, and receive reassurance and validation with empathy and compassion The need for a tailored approach for each individual CYP as each individual’s needs differ! Clinicians need to be flexible, e.g. duration and timings of appointments Value multi-disciplinary working – this is also an opportunity for clinicians to learn and feel supported We have a responsibility to provide learning opportunities and mentoring/support to local network colleagues WHAT NEXT? To potentially develop National guidelines for Child and Young Person (CYP) with other stake holders.


Evelina London Children's Hospital, London, United Kingdom
Introduction/Background: The Rheumatology service provides outpatient assessment and rehabilitative intervention for CYP with inflammatory/non-inflammatory pain conditions across South London and Southeast England. CRPS remains poorly understood condition. Young people experience persistent severe and debilitating pain. The service receives approximately 20 referrals per annum, a figure increasing year-on-year. Early recognition and intervention is key for successful outcomes, but referrals to specialist services may be delayed months from onset of symptoms. No current national pathway to manage CRPS for paediatric patients. The team are aiming to identify "gold standard" intervention for CYP with CRPS, using existing models. matching resource to need. Description/Method: Exact cause of CRPS unknown. Injury sometimes trigger, but not 1/10 cases. More common in women. 1.2/100,000 CYP (5-15 years old) in the UK; 15,000 new adult cases in adults pa (1 in 3,800). Diagnosis mainly clinical. No specific test confirms CRPS. Mainly based on symptoms and physical examination. Symptoms include: usually single limb, can be widespread pain (particularly allodynia), hypersensitivity, altered sensation skin changes around affected area, e.g. sensitive to touch, change in temperature swelling of limbs hair & nail growth functional impact increased sweating stiffness increased anxiety, lower mood, depression muscle weakness Difficult to treat -no single treatment available Duration of intervention varies from few weeks (mild cases) to indefinitely in some. CRPS can impact on activities of daily living, mobility, school attendance, sleep, mood. Early diagnosis and intervention is key. Imperative need for MDT approach; enables CYP to start to live alongside pain and develop control over their lives. CASE STUDY -14F Past Medical History ¼ DDH and Perthes of L hip; last surgery October 2020 (metalwork removed) 2021 -Presented with significant pain, numbness and restricted movement in left leg. Admitted locally for 6-day investigation. Labelled "very complex". No improvement upon discharge. Limited mobility -using wheelchair Reduced school attendance (30%) Not wearing shoe/sock (left foot) Limited socialisation Affecting mood and mental well-being 2022 Referral to RhEve Attended ELCH One-Stop Clinic; met Rheumatologist Reassurance, understanding and validation þ robust diagnosis of CRPS Referred to Physio/OT for intervention Seen within 1/52 by Physio/OT Repeated CRPS messages -ensured understanding; reassurance that team "know" how to treat; not complex for us! Focus not on "fixing" pain Use of breathing/distraction techniques; encouraged weight-bearing, movement, desensitisation and mobility Discussion/Results: CASE STUDY INTERVENTION OUTCOMES [after one x 2 hour therapy session]: Touching own leg Noticed colour change in L leg/foot Actively started to move toes Took partial weight through L heel using crutches Negotiated stairs Reported to feel "confident" enough to be able to work on strategies at home Trialled wearing a soft shoe on her L foot Learnt breathing techniques and was able to use distraction Able to set some functional goals, e.g. school attendance, playing football, seeing friends From our extensive experience, we understand that: Intervention begins with the individual) -"Being healthy is more than just not being ill -it's about our physical, mental and emotional wellbeing" MDT approach is the most successful treatment for CRPS. This patient group demands a great deal of resource (e.g. clinics, inpatient admissions, therapy intervention time, liaison between ELCH and local teams) A confident, robust diagnosis is essential to support the young person and family in engaging with treatment intervention, moving from precontemplation to contemplation stage of change The CYP & their family must understand the diagnosis and show readiness for rehabilitation in order to move to the preparation stage of change Therapeutic intervention is most likely to be successful when the patient has engaged with treatment and has started to gain control of their symptoms, thereby moving from preparation towards action Our hypothesis is that by being aware of the stages of change and delivering interventions at the "correct" time the team can facilitate improved and quicker outcomes with the patient's rehabilitation. Key learning points/Conclusion: The young people that we see: Need confident & robust diagnoses delivered with empathy Benefit from time and space to process complex diagnoses Gain from continual opportunities for learning and asking questions Deserve to feel listened to, and receive reassurance and validation with empathy and compassion The need for a tailored approach for each individual CYP as each individual's needs differ! Clinicians need to be flexible, e.g. duration and timings of appointments Value multi-disciplinary working -this is also an opportunity for clinicians to learn and feel supported https://academic.oup.com/rheumap i25 POSTERS We have a responsibility to provide learning opportunities and mentoring/support to local network colleagues WHAT NEXT? To potentially develop National guidelines for Child and Young Person (CYP) with other stake holders.

Abstract citation ID: rkac067.009 P09 DOES A VIRTUAL PAIN EDUCATION WORKSHOP
A qualitative content analysis of the patient's reported hopes for (preworkshop) and what they took away (post workshop) was undertaken and key themes were identified. Discussion/Results: Since November 2020, a total of 140 patient were offered PEW, 107 of which undertook this intervention. Group sizes varied from 4-14 young-person and parent diads, over 17 sessions. Full data sets for pre-and post-intervention feedback were analysed on 56/107 patients. These patients' average age was 14 (range 9-18); 47 female, 9 male. The mean patient self-reported understanding of chronic pain preworkshop was 2.8/5 (range 1-5). Post-workshop scores increased to 4.0/5 (range 3-5). Patient's confidence in managing their pain increased from 3.2/5 (range 2-5) to 3.9/5 (range 2-5). Paired T-tests on these scores showed a statistically significant difference in understanding chronic pain post PEW (P < 0.001), and in confidence in selfmanagement post PEW (P < 0.001). Themes identified pre-intervention by the young people included: • Increasing understanding and knowledge of chronic pain • learning how to cope with pain • Improving access to treatment Take home message themes: • relaxation techniques • pacing • goal setting. Analysis of the themes in combination with the patient reported scores demonstrated that outcomes as set by the young person were met by the intervention. The results from this study provide evidence for the effectiveness of PEW, in terms of delivering predefined workshop outcomes. It showed significant improvements in patients understanding of chronic pain, and patient's confidence in using self-management strategies. Similarly, when asked what they took away from the intervention, patients reported wanting to practice using self-management strategies-reinforcing the assumption that PEW was effective in increasing patients confidence to self-manage. As a result, the findings are supportive of assumptions that CBT interventions combined with pain education can have a positive impact, increasing patient's selfefficacy and increasing their confidence to self-manage. Key learning points/Conclusion: In conclusion, this study provides evidence for the effectiveness of a brief multidisciplinary biopsychosocial intervention for chronic pain. Previous research into the field has mainly focused on face-to-face interventions run over numerous weekly sessions. We have demonstrated similar effectiveness whilst using an online, one-off intervention.
can access patients and offer effective the impact on resources. Moreover, we prosupport for young people during and post sample is needed to fully assess the effecto generalise to a wider population. 40). Paediatric patients with chronic conditions persistent/chronic absences (school attendhas shown that psychoeducational interveneffective when they are run on weekends to Access to technology to participate in a virfactor.
gitudinal studies are needed to assess the of PEW. We are unable to predict whether in using self-management strategies after long. Since chronic pain is recurrent pain lastit is important to capture how effective PEW is confidence in managing their condition in the to assess the long-term effectiveness of improving patients understanding of pain.
can improve 9-24 hours after new informapast 24 hours, recall of learnt information starts n is not relearned continuously. Not being can affect patients' abilities to utilise this strategies and manage symptoms long

BUT THE PAIN IS NOT ALL IN MY
Hospital, Guy's and St Thomas NHS Foundation Trust, London, United Kingdom Introduction/Background: Chronic pain has been dubbed a place where mental and physical health meet. The emotional and social needs of young people experiencing Chronic Pain can be vast, yet families often fall through cracks in services. Other families receive a plethora of support options from psychological practitioners, allied health professionals and social care, but with laser focus on the medical answer and fix decline all potential referrals. Historically psychology received numerous referrals for young people who declined to meet with us, leaving our colleagues and families feeling unheard, frustrated stuck and alone. How to support families/colleagues without seeing children individually? Description/Method: Ed (15-year-old male) experiencing paralysis and pain in dominant arm and hand: • extensive investigations and specialist consultations sought, including scans and neurological opinion -nothing medically concerning identified.
• Previous referral to another tertiary psychology service made and group therapy offered. • Over the course of the investigations reports of pain and A&E attendance increased, whilst school attendance decreased -> referred to chronic pain service. Input offered at Evelina London: • 2 x Multidisciplinary clinic (chronic pain diagnosis given at first appointment).
• 1 x Pain education workshop.
• Multiple physiotherapy and occupational therapy appointments.
• 3 x referrals to psychology over preceding 9 months with concerns about mood and engagement. Progress: Initial gains in first months • Pain and paralysis reduced to dominant hand only.