P24.04.A PATIENT AND PUBLIC INVOLVEMENT IN A NEURO-ONCOLOGICAL RESEARCH PROJECT

Abstract BACKGROUND Development and implementation of an intervention targeting a specific population can be significantly enhanced through the integration of Patient and Public involvement (PPI). The aim of this study is to apply PPI in the process of developing a supportive group intervention for caregivers to patients diagnosed with a glioblastoma. MATERIAL AND METHODS Establishment of a national PPI panel including current or bereaved caregivers to patients diagnosed with a glioblastoma was recruited through the Danish Brain Tumor Association (Hjernetumorforeningen). Terms of reference for the panel have been established, describing purpose, terms, and meeting format. Online Team meetings and a face-to-face co-creative workshop with the panel was conducted in corporation with the Danish Knowledge Center for User Involvement in Health Care. Next step, the level and value of caregiver involvement will be measured by using the Patient Engagement in Research Scale (PEIRS-22), to gain knowledge on how meaningful the caregivers experienced their engagement in the research process. RESULTS A national panel of current and bereaved caregivers (n=10) was engaged in the PPI-process and provided valuable knowledge to the development of the intervention. Ongoing online Team meetings were held every second month with the panel, video-recorded, and subsequently transcribed. This process aimed to identify themes within the topics discussed with the panel and to ensure inclusion of the caregivers’ insight and needs in the design of the intervention. The purpose of the workshop was to target the further development of the intervention and to gain more structure in the design. Creating a collaborative PPI-process with the panel included thorough preparation for each meeting with a pre-distributed agenda. Preparing the caregivers for the topics to be discussed, ensured to gain the requested information, and meanwhile creating an open and inviting forum were important element of the process. CONCLUSION PPI in current co-creating process was a time consuming yet valuable process, where caregivers’ experiences and perspectives were addressed in the design and development of a supportive group intervention.