P05 The current evidence for transitional care in young people with chronic pain: a systematic review

Abstract Introduction/Background Paediatric chronic musculoskeletal pain presents a significant individual and societal burden, with an estimated prevalence of 11-38%. A large proportion of young people (YP) with chronic pain are likely to have unresolved pain which continues into adulthood and as a result require transitional care. To date, although there is guidance and transitional care research in a range of health conditions, there is limited evidence identifying the extent to which transitional care for YP with chronic pain has been developed or investigated in research. Our objective was to review the current evidence for transitional care in young people with chronic pain. Description/Method The PEO tool was used to develop a search strategy, where the Population was “young people”, the Exposure was “chronic pain” and the Outcome was “Transition to Adult Care” or variations of such words. Studies were identified by searching 4 databases: EMBASE, Medline, CINAHL and PsycINFO. Inclusion criteria were: sample population age between 10-24 years, a confirmed diagnosis of a condition characterised by chronic pain, any health care setting, any service provider, published peer reviewed, English language. Excluded were case reports, editorials, abstracts, meta-analyses, books or book chapters. Searches took place between September and December 2021. Discussion/Results 98 papers were identified by the search; 14 were selected after abstract screening. Two independent reviewers then screened papers for inclusion, extracted data, and assessed the quality of the studies followed by a senior reviewer. Of the 14 papers, full text review found that none of the papers looked specifically at the evidence with respect to transitional care for YP with chronic pain. Of those which did not meet the inclusion criteria, there were 4 papers which highlighted the importance of considering transitional care for YP with chronic pain and informed our discussion. Key learning points/Conclusion The lack of studies addressing transitional care for YP with chronic pain was surprising in view of the prevalence of chronic pain during adolescence and the reported importance to YP. To date, most research has considered disease-specific transitional care. Due to the lack of results reported here, the question remains as to whether transitional care for YP with chronic pain differs significantly from transitional care for other long-term health conditions. Unique challenges faced by YP with chronic pain have been proposed in the literature. However, we would argue that these are also experienced by YP with rheumatic conditions, for example, stigma and lack of belief of the condition. Consideration of whether transitional care is truly different for these YP is a useful starting point for future research. Building on existing research will be important. For example, meeting the adult provider has been identified as a predictor of successful transition but is challenging when chronic pain is the primary condition, as there isn’t a clear pathway of which adult service these YP will transfer to. Likewise, appropriate parental involvement has been identified as a predictor of successful transition. Evidence has shown that parents of YP with chronic pain may restrict their child’s independence, and therefore will need to be addressed as part of transitional care provision. Finally, chronic pain is a feature of many long-term health conditions, for example, sickle cell disease, cystic fibrosis, cerebral palsy. How pain management is addressed in existing transitional care provision for rheumatic conditions such as JIA and SLE and the relationship of pain to outcomes of transitional care needs further research. If effective interventions can be provided during these crucial years, the trajectory of these YP as adults can potentially be improved in the long-term, reducing the individual and societal burden of pain.

Introduction/Background: Pain is a predominant symptom that young people often present with in paediatric rheumatology clinics. There are several challenges with respect to pain communication between young people and healthcare professionals (Lee RR 2020). At a virtual Your Rheum meeting, (Your Rheum is a national young person's advisory group in rheumatology), a word cloud was developed as part of the discussion to start conversations around the development of a future pain research project. Afterwards, the young people suggested the word cloud would potentially be useful to start discussions about pain in clinic. Description/Method Aim: to determine acceptability of using a word cloud as a communication tool to prompt discussions with young people aged 11-24 years about pain in clinic. Healthcare professionals in the Barbara Ansell National Network for Adolescent Rheumatology BANNAR network were asked by Your Rheum to give out the word cloud form to consecutive young people with pain in their clinic. The following data was collected: words in the current word cloud (consisting of 35 words) which described their pain, additional words to add to the word cloud, perception regarding the usefulness of a word cloud to aid conversations about pain, using a four-point scale ranging from 'not at all' -'yes a lot'. The age and gender of each young person was also collected. The information gathered was then collated by Your Rheum members. Discussion/Results: Of 33 young people who completed the forms, 26 were female and the mean age was 15 years, range 9-22 years. Young people selected a mean of 13/35 words from the word cloud, range 2-27 (table 1). Of the 33 young people, 14 suggested additional words (median of 2, range 1-24). Table 2 highlights additional words  that could be added to the word cloud. When asked if a word cloud  would help young people talk to health professionals about their pain in  clinic, the majority said it yes it would (19¼yes-a lot, 8¼yes-a little,  5¼possibly, 0¼not at all 1¼missing data).
Key learning points/Conclusion: The word cloud was acceptable to the participants in this study and demonstrated potential as a communication prompt from the young person's perspective. Research is needed to determine what impact it has on pain communication between the young person and healthcare professional in the actual clinic visit. Introduction/Background: Paediatric chronic musculoskeletal pain presents a significant individual and societal burden, with an estimated prevalence of 11-38%. A large proportion of young people (YP) with chronic pain are likely to have unresolved pain which continues into adulthood and as a result require transitional care. To date, although there is guidance and transitional care research in a range of health conditions, there is limited evidence identifying the extent to which transitional care for YP with chronic pain has been developed or investigated in research. Our objective was to review the current evidence for transitional care in young people with chronic pain. Description/Method: The PEO tool was used to develop a search strategy, where the Population was "young people", the Exposure was "chronic pain" and the Outcome was "Transition to Adult Care" or variations of such words. Studies were identified by searching 4 databases: EMBASE, Medline, CINAHL and PsycINFO. Inclusion criteria were: sample population age between 10-24 years, a confirmed diagnosis of a condition characterised by chronic pain, any health care setting, any service provider, published peer reviewed, English language. Excluded were case reports, editorials, abstracts, meta-analyses, books or book chapters. Searches took place between September and December 2021. https://academic.oup.com/rheumap i23 POSTERS Discussion/Results: 98 papers were identified by the search; 14 were selected after abstract screening. Two independent reviewers then screened papers for inclusion, extracted data, and assessed the quality of the studies followed by a senior reviewer. Of the 14 papers, full text review found that none of the papers looked specifically at the evidence with respect to transitional care for YP with chronic pain. Of those which did not meet the inclusion criteria, there were 4 papers which highlighted the importance of considering transitional care for YP with chronic pain and informed our discussion. Key learning points/Conclusion: The lack of studies addressing transitional care for YP with chronic pain was surprising in view of the prevalence of chronic pain during adolescence and the reported importance to YP. To date, most research has considered diseasespecific transitional care. Due to the lack of results reported here, the question remains as to whether transitional care for YP with chronic pain differs significantly from transitional care for other long-term health conditions. Unique challenges faced by YP with chronic pain have been proposed in the literature. However, we would argue that these are also experienced by YP with rheumatic conditions, for example, stigma and lack of belief of the condition. Consideration of whether transitional care is truly different for these YP is a useful starting point for future research. Building on existing research will be important. For example, meeting the adult provider has been identified as a predictor of successful transition but is challenging when chronic pain is the primary condition, as there isn't a clear pathway of which adult service these YP will transfer to. Likewise, appropriate parental involvement has been identified as a predictor of successful transition. Evidence has shown that parents of YP with chronic pain may restrict their child's independence, and therefore will need to be addressed as part of transitional care provision. Finally, chronic pain is a feature of many long-term health conditions, for example, sickle cell disease, cystic fibrosis, cerebral palsy. How pain management is addressed in existing transitional care provision for rheumatic conditions such as JIA and SLE and the relationship of pain to outcomes of transitional care needs further research. If effective interventions can be provided during these crucial years, the trajectory of these YP as adults can potentially be improved in the long-term, reducing the individual and societal burden of pain.

Hospital, Liverpool, United Kingdom
Introduction/Background: Management of children with chronic pain predominantly focuses on paced and graded activity to regain functional loss, this case summarises a different approach, resulting in improved patient outcome through use of 'acceptance'. Early intervention from therapeutic services is integral to patient's prognosis with attention being given to restoring limb function, improving pain and increased QoL. The majority of people with CRPS will see a reduction in pain within two years. However, evidence supports some people will continue with pain despite treatment and therapy intervention. At which point is a different approach needed, enabling the individual to take control. Description/Method: Teenage female originally diagnosed with developing chronic pain patten. Admitted for two session following goal setting using the COSA under the occu therapy service. Initial goals met during inpatient stay; child with advice to continue progress at home. regressed and subsequently functional level reduced. During appointments it became clear that she was struggling with her tion of "being different" and not being able to complete the wanted to do. Using elements from Ten footsteps approach the therapist was able to explore and empower, particularly, using "footstep 2" Acceptance. This enabled to the patient to acknowledge that pain was a present in her life however did not need to stop her living an active life with some adjustments. By spending some time exploring how wheelchair users can achieve and succeed, the patient was able to progress by accepting her limitations due to pain whilst finding ways to do the things that she wants and needs too. For example, she spent time education her school about how the environment and attitudes could be changed to help her be an active member of the school community. Furthermore, she accepted in the short term that using her wheelchair outdoors meant she could spend time with friends and remain independent at home with ADLS, empowering her to be in control of her pain levels.
Although other elements of the Ten Footsteps approach where used Acceptance was crucial to compliance with intervention and enable her to feel in control of her therapy input. Therapy remains ongoing, however time between follow ups has increased significantly, with increased patient control of symptoms and their management. Furthermore, she actively participates in school activities and has become an advocate for herself and others in similar situations. Discussion/Results: This particular case, highlights the advantage to having Occupational Therapy treating in this area, being able to offer a holistic approach to intervention but also focus meaningful and purposeful occupation. This results in a balance of health and well-being being achieved, regardless of the individual functional deficits. Occupational therapists are best placed to lead with this patient group due to their uniquely training to be able to bridge the gap between physical health and mental health. This highlights how both are intertwined together and neither can be separated when aiming to achieve a meaningful and purposeful life. Furthermore, there is the potential for occupational therapy to bridge the gap between MDT member ensuring continuity for the patient. The Initial treatment programme failed to yield the results and the patient plateaued it was important to explore if this was the right approach always rehab or is there a place for Acceptance -resulting in a fulfilled meaningful and purpose full life. This case also highlights how using the evidence base within Occupational Therapy alternative approach can be used depending on the individual that is being treated. In this case acceptance of a "life with pain" and a life using a wheelchair enable the patient to accept their functional abilities and work with them to achieve a meaningful and purposeful life. Furthermore, this enable the patient to progress physically which with the traditional approach of returning to baseline (pre illness) had been halted. Until OT discussed living life to the full regardless of adaptations and equipment the patient was reluctant to work on graded goals as they wanted to achieve their ultimate goal of walking without an aid. However once focusing on success stories of individuals who live a fulfilled life despite of a disability the patient was able to refocus and achieve.
Key learning points/Conclusion: Sometimes the well-used approach is the most comfortable for us as therapists however this often results in a one size fits all intervention and will not achieve the best outcome therefore alternatives should always be explored. A holistic approach is needed in order to enable patients to reach their goals. There is not a one size fits all approach and as an Occupational therapist we have a duty to explore and adapt in order to get the best outcomes for our patients. Acceptance was the key for the patient to be able to explore current abilities, identity deficits and work on individual goals within their capabilities. Therefore, what was evident is that by accepting current abilities the patient was able to work on more realistic and grade goalsresulting in progress. For future practice exploring a holistic and realistic approach need to be embraced from the beginning with a view to be flexible. Standard needs to be widened to ensure that therapist feel comfortable when the "norms" are not working and know how to adapt and negotiate difficult conversations.

Manchester, United
Introduction/Background: This case has many important discussions and demonstrates the role of psychological therapy in treatment. The young person presented with chronic pain and was unable to walk (in a wheelchair). There had been a missed ASD diagnosis due to atypical presentation. There were accusations of fabricated illness which had led to mistrust of professionals and had impacted on family. The patient's selective mutism was a challenge to therapeutic approach and required increased creativity and flexibility. This case highlights the impact of Sensory processing difference and the relationship to chronic pain. The patient's significant anxiety led to treatment limitations. Description/Method: This young person was referred to us after they had been seen by several teams over a significant period. There were multiple presenting issues without a systemic understanding of the