AB1688-PARE INDIVIDUAL HEALTHCARE PLANS AS A JUVENILE IDIOPATHIC ARTHRITIS SHARED-MANAGEMENT TOOL: A SECONDARY QUALITATIVE ANALYSIS
Authors: S. Stones
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Individual healthcare plans (IHPs) are documents written in collaboration between children and young people (CYP), families, healthcare professionals (HCPs), and education professionals. Primarily aimed at informing schools, IHPs outline CYP's individual health and wellbeing needs, and can facilitate conversations to identify CYP's needs and priorities in school. <h3>Objectives:</h3> To explore how IHPs can be used as a shared-management tool for CYP with JIA. <h3>Methods:</h3> A secondary analysis of underused data from a UK-based qualitative study exploring JIA self- and shared-management support [1] was conducted. Thematic analysis of the data was undertaken using NVivo12. <h3>Results:</h3> Three themes emerged: 1) awareness of IHPs; 2) IHPs as a holistic communication tool of CYP's needs; and 3) HCP influence over IHPs. There appeared to be a poor awareness of IHPs and the existence of a JIA-IHP template on the Health Conditions in School Alliance website. This lack of awareness applied across all stakeholder groups, including HCPs – some of whom were aware of IHPs, but had never used them or directed families to them. Similarly, some parents were aware of IHPs, but stated that their child had not been given one. When IHPs became part of the conversation, it appeared to be in response to when issues surfaced, particularly at school. Moreover, when IHPs were in place, additional challenges materialised in ensuring relevant members of staff were aware of IHPs, and then able to interpret the contents and apply the recommendations consistently and appropriately. Adapted versions of IHPs, in the form of disease passports and 'all about me' summaries, were also mentioned, where all the relevant information about CYP is appropriately detailed in a summarised fashion and would be utilised to educate new staff. IHPs were considered useful resources in helping CYP and their families document and articulate their needs. Ensuring IHPs were bespoke to individual CYP was highlighted, reflecting their unique and evolving needs and the way in which their condition impacts their life over time; ensuring they are maintained and regularly updated, at least annually. Extending beyond their utility in documenting CYP's needs, IHPs were regarded as useful facilitators of communication and shared decision making; better equipping families in proactively engaging with their child's school to help them learn, particularly if they were hesitant to approach and speak to staff members. The need for multidisciplinary input towards IHPs was also highlighted, though it was less clear as to who was responsible for initiating the conversation about IHPs amongst HCPs, and subsequent completion and implementation. Some parents described instances where the onus was on them to complete the IHP and co-ordinate the relevant input from HCPs before sharing with their child's school. However, this was not the case for all families, and further, completion of IHPs could be difficult, especially in the immediate post-diagnosis timeframe. It became clear that there was a need for greater focus on IHPs from HCPs, with more regular discussions in clinic. One participant hypothesised that the IHP could guide the conversation between HCPs and CYP, by working through the IHP, addressing different topics such as participation at school, physical activity, psychosocial wellbeing, and socialising, which may or may not be asked during conventional consultations. <h3>Conclusion:</h3> IHPs play a potentially important role as a holistic, shared-management communication tool between CYP, families, HCPs, patient organisations, and education professionals. However, awareness of IHPs is variable, with no current, standardised approach for their application into routine practice. With templated IHPs for JIA already available, assignment of responsibility for their completion, and regular maintenance, could help CYP and families articulate their needs and preferences more consistently, thus enhancing their involvement in shared decision making to improve the way in which they manage their health and wellbeing. <h3>REFERENCES:</h3> [1] Stones S, Swallow V, and Milnes L. Ann Rheum Dis 2022;81(1):79. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> Simon Stones Owns share options in Envision Pharma Group, Employee of Envision Pharma Group.