P50 Addressing the vocational development of young people with long-term health conditions in health care settings: a systematic review and mixed methods synthesis

Abstract Introduction/Background Long term health conditions (LTHC) such as rheumatic conditions have significant impact on the biopsychosocial development of young people (YP) including vocational development. Educational transitions are prominent during adolescence and young adulthood yet not all transitional care programmes in rheumatology address this area [1]. The aim of this study was to identify and synthesise the benefits and experiences of addressing the vocational development of YP with LTHC in health care settings. Description/Method A mixed methods synthesis approach [2] was employed. We systematically searched 10 bibliographic databases. Restrictions were applied on publication date (1996-2020) and publication language (English). Articles reporting quantitative and/or qualitative primary research on addressing vocational needs/issues of YP with LTHC in health care settings were included. YP was defined as 10-24 years [3]. Two reviewers independently screened records using predetermined inclusion/exclusion criteria [4]. Quality appraisal was undertaken following study selection. Qualitative data were synthesised thematically. Quantitative data were synthesised narratively, given that a pooled synthesis was not considered appropriate. A cross-study synthesis integrated findings from both the qualitative and quantitative syntheses. Discussion/Results 43 articles were included. The quality of qualitative evidence was good; however, the quality of quantitative evidence was poor. The thematic synthesis of stakeholders’ perspectives (n = 23 qualitative studies) resulted in seven recommendations for interventions: provide skills training; provide psychological support; offer to liaise with key stakeholders in educational/workplace settings; provide specialist career advice; provide information, signposting and facilitate access to supporting services; provide/facilitate access to social support; provide flexible care and optimal disease management to support education/employment transitions. The narrative synthesis summarised the results of 17 interventions. The cross-study synthesis mapped interventions against the set of recommendations arising from stakeholders’ perspectives: four interventions met five recommendations; two interventions met four recommendations; five interventions met three recommendations; six interventions met two recommendations. Transitional care interventions were the type of intervention that most comprehensively met the recommendations. The way in which interventions addressed vocational issues was not always clear, with some interventions addressing them directly and others indirectly. No interventions had vocational issues as the core, defining component of the intervention. Key learning points/Conclusion Existing stakeholder evidence highlights that vocational development is an important area to address in the care of YP with LTHC such as rheumatic diseases. The resulting set of recommendations provides guidance for future research in this area and transitional care developments in rheumatology. Further work in this area should address these aspects to enable better quality evidence and ensure consistency. References [1] Clemente D et al. Pediatr Rheumatol Online J. 2017 Jun 9;15(1):49. [2] Kavanagh, J et al Synthesizing Qualitative Research: Choosing the Right Approach. Wiley-Blackwell, Chichester, UK, pp. 113–136 [3] World Health Organization, 2001. The second decade: improving adolescent health and development. Geneva. [4] Farre A et al. PROSPERO 2016 CRD42016051359.

Introduction/Background: Over the last 10 years since BANNAR was established, there has been increasing awareness of the specific age and developmental needs of adolescents and young adults (AYA) with rheumatic disease. The aim of this study was to describe the current BANNAR membership to ensure representativeness and determine clinical and research capacity to inform future strategies. Description/Method: An online survey on Microsoft Forms (version 2021) was developed, piloted with the BANNAR leadership team and then disseminated to existing members in addition to any new members as part of the membership process. Discussion/Results: As of May 2022, there are 118 members. The BANNAR membership includes a wide variety of roles, from healthcare professionals reflecting the multidisciplinary team to charity representatives, academics, and researchers. Of the clinically active professionals (n ¼ 93) there are more members working in the paediatric (n ¼ 57) compared to the adult care setting (n ¼ 34). There are 15 members in training posts, 16 members in research-only roles, and 9 charity representatives. Membership is predominantly female with a gender ratio of members F104: M14. Members are predominantly White British (n ¼ 81, 69%) and include representation from all regions of England and the devolved nations in addition to 1 researcher based in Australia. 27/116 (23.3%) members reported being currently involved in AYA research with 2 nonrespondents. This research was wide ranging and involved both basic science as well as clinical research. Of the NHS clinicians (excluding the clinical academics), 34/79 (43%) had research in their job description and/or job plan. Of 56 paediatric clinicians, 34 had access (61%) to a dedicated adolescent clinic in the paediatric setting. 37/93 NHS clinicians (40%) had access to a young adult clinic in adult services. Of the 93 clinically active members, only 15 (16%) regular in-service training for team members in AYA (25%) clinician members used/signposted team Adolescent Health e-learning project (www.e-(59%) reported that they were unaware of this resource. Key learning points/Conclusion: BANNAR is a with membership reflecting the multidisciplinary team researchers and charity representatives. As such, advisory panel -Your Rheum -it is an excellent resource to support future AYA rheumatology research. However, there remain challenges for clinicians in contributing to research, with less than half having formal provision for research in their job descriptions. Furthermore, even in this committed group of AYA-focussed individuals, there was not universal access to adolescent and/or young adult clinics and there are still areas for development in AYA rheumatology training.
Introduction/Background: Long term health conditions (LTHC) such as rheumatic conditions have significant impact on the biopsychosocial development of young people (YP) including vocational development. Educational transitions are prominent during adolescence and young adulthood yet not all transitional care programmes in rheumatology address this area [1]. The aim of this study was to identify and synthesise the benefits and experiences of addressing the vocational development of YP with LTHC in health care settings. Description/Method: A mixed methods synthesis approach [2] was employed. We systematically searched 10 bibliographic databases. Restrictions were applied on publication date (1996-2020) and publication language (English). Articles reporting quantitative and/or qualitative primary research on addressing vocational needs/issues of YP with LTHC in health care settings were included. YP was defined as 10-24 years [3]. Two reviewers independently screened records using predetermined inclusion/exclusion criteria [4]. Quality appraisal was undertaken following study selection. Qualitative data were synthesised thematically. Quantitative data were synthesised narratively, given that a pooled synthesis was not considered appropriate. A cross-study synthesis integrated findings from both the qualitative and quantitative syntheses. Discussion/Results: 43 articles were included. The quality of qualitative evidence was good; however, the quality of quantitative evidence was poor. The thematic synthesis of stakeholders' perspectives (n ¼ 23 qualitative studies) resulted in seven recommendations for interventions: provide skills training; provide psychological support; offer to liaise with key stakeholders in educational/workplace settings; provide specialist career advice; provide information, signposting and facilitate access to supporting services; provide/facilitate access to social support; provide flexible care and optimal disease management to support education/employment transitions. The narrative synthesis summarised the results of 17 interventions. The cross-study synthesis mapped interventions against the set of recommendations arising from stakeholders' perspectives: four interventions met five recommendations; two interventions met four recommendations; five interventions met three recommendations; six interventions met two recommendations. Transitional care interventions were the type of intervention that most comprehensively met the recommendations. The way in which interventions addressed vocational issues was not always clear, with some interventions addressing them directly and others indirectly. No interventions had vocational issues as the core, defining component of the intervention. Key learning points/Conclusion: Existing stakeholder evidence highlights that vocational development is an important area to address in the care of YP with LTHC such as rheumatic diseases. The resulting set of recommendations provides guidance for future research in this area and transitional care developments in rheumatology. Further work in this area should address these aspects to enable better quality evidence and ensure consistency. immense pressures placed on l shielding advice for patients on immunosuppressive treatments at the beginning of the COVID-19 pandemic, the rheumatology team at this paediatric tertiary centre decided to decrease the blood monitoring frequency for paediatric rheumatology patients on adalimumab and etanercept monotherapy to 6 monthly from 3 monthly. This service evaluation aims to identify whether this change in monitoring frequency led to a negative impact on patient safety. Description/Method: A record of all relevant patients was obtained using WellSkyV R dispensing records. Filters were applied in order to be able to compare data in patients who were on the drugs for sufficient time (6 months) both pre and post change in monitoring frequency (defined as May 2020). Derangements in blood results (neutropenia, thrombocytopenia and liver function tests [LFTs]) were recorded, categorised (clinically significant ¼ neutropenia <1 x 10 9 /L, thrombocytopaenia <100 x 10 9 /L, LFTs >3 fold upper limit of normal [ULN]) and compared. Adherence to suggested blood monitoring frequencies was evaluated pre and post change. It was deemed acceptable by the rheumatology team to be up to 1 month late for blood monitoring Discussion/Results: 585 blood tests were performed across 96 patients between April 2019 and October 2021. There were 101 blood derangements in total (17%, 101/585). 54.5% (55/101) of derangements occurred pre change, with 14.5% (8/55) being classed as clinically significant. Of the derangements that occurred post change, only 6.5% (3/46) were clinically significant and were observed in one patient. All clinically significant derangements (pre and post change) were related to the LFTs. All clinically significant derangements were observed in adalimumab patients. More patients adhered to the monitoring frequency post change (71% post change vs 55% pre change). Patients who had experienced clinically significant derangements pre change, did not show any post change. Key learning points/Conclusion: This service evaluation has many limitations that impede drawing definite conclusions. For instance, other potential causes of LFT derangements were not recorded. Dose and frequency of administration of adalimumab and etanercept were also not recorded. Nonetheless, changing to 6 monthly monitoring does not appear to have had a negative impact on patient safety. It appears that an increased frequency of blood monitoring in these patients results in an increase detection of mild blood derangements. The incidence of clinically significant derangements in LFTs was reduced post change and clinically significant neutropaenia and thrombocytopaenia were not detected. Lower frequency of monitoring benefits both the NHS, patients and their families. We conclude that for the majority of patients on adalimumab or etanercept monotherapy, the benefits of 6 monthly monitoring outweigh any potential risks and we will continue to apply this approach to our patients in the future. Introduction/Background: Patients attend rheumatology daycare either for regular infusions or one episode depending on their treatment. A typical day for a child would involve observations, having a cannula put in and having the infusion before returning home. Due to the COVID-19 pandemic, there had been some changes to the day care pathway in our hospital including: only one parent being allowed to attend with their child; a strict timing schedule; COVID-19 testing prior to attending appointments. We felt it is vital to know the young person and the family's perspectives of their experience at day care. Description/Method: A special study module (SSM) medical student conducted a feedback survey over a 2 month period (December 2021 and January 2022). The aims and objectives were focused on the following:

References
. Whether the patients are receiving an appropriate level of care to optimise their experience at day-care. . was their treatment given in a timely manner? . Were there any delays, if so the reasons and actions taken to mitigate.
2 questionnaires were used, one for the patient and one for the parent/ carers. The questionnaires were provided to the patient/carers during their admission by the admitting nursing staff. The medical student collected the questionnaires at the end of the day. Discussion/Results: 39 patients attended the daycare during this period. 9 completed questionnaires were received.
• Feedback from parents/carers: -Carers (100%) said they were happy with how they had appointment dates and most appointments took their availability and preferences into consideration. Due to COVID, families were notified of their appointment time only one day prior; this was highlighted as an area for improvement to ensure enough notice for the appointment time.
-All parents (100%) agreed that they received enough information regarding their child's appointment at daycare and this was delivered in an understandable manner.
-77.8% (7 out of 9) of parents did not experience long waiting times at their appointment. 22.2% (2 out of 9) parents said there were long waiting times at their appointment, and they were made aware of the reasons regarding the wait. The main reasons highlighted was busy ward with lots of patients.
-2 out of 7 parents indicate the care provided has remained the same pre-and post-pandemic. 3 out of 7 patients felt that their care has improved due to the following reason: treatment was completed more quickly; wards looked less busy as there were limited patients present at one time; there was a reduced length of stay compared to pre-COVID.
• Children's questionnaires: -100% (9 out of 9) children were happy with the care received at daycare.
-5 out of 9 children had play therapist input and they all found it helpful. Key learning points/Conclusion: Despite the COVID pandemic restrictions, all young people and families had a positive experience during their day care treatments. Effective communication and engaging the patients and families, and providing appropriate explanations to any delays in treatment is vital. The overall experience has provided an opportunity to reflect on the systems to manage the day care treatments, which we presume has been the case in many centres. Allied health professionals like play therapists and youth teams provide immense support to the young people who are attending day care for regular treatments. Provision of these services to all young people if appropriate will enable positive experiences to the patients. Limitation of this survey was a small sample size with the response rate of only 23%. Further survey over an extended period may provide more insight in this area.