5610726 EXPERIENCE OF LIFE FOR CHILDREN AND YOUNG PEOPLE WITH SICKLE CELL DISORDERS: LESSONS LEARNED FROM A PUBLIC ENGAGEMENT EVENT

Abstract

Background: Sickle cell disorder (SCD) is one of the most common genetic conditions in the UK1. Pain episodes, multiple hospital attendances, poor access to care and racism are some factors that affect quality of life in SCD2. Many contributing factors mean that more deprived patients often face worse outcomes3. There is limited published data on the primary concerns of children and young people with sickle cell disorders (CYPSCD) in the UK, and what they feel would help manage their condition. Aims: A regional engagement event was held for CYPSCD and carers in a non-clinical setting. Analysis of data collected at the event had the following aims: To understand the concerns for CYPSCD and what could help manage their health To understand the concerns of parents and carers of CYPSCD and what could help manage their health To examine if attendees of the event were representative in term of index of multiple deprivation (IMD) when compared to CYPSCD within the network. Methods: A public engagement event, funded by three NHS trust charities, was advertised as a free, festival-like event with a range of activities including a DJ, choir and outdoor games. Attendees were asked to complete an electronic survey with demographic data alongside two questions for CYPSCD; ‘what are your worries, if any, of living with sickle cell’ and ‘what do you think would make it easier to manage your sickle cell disorder? Carers of CYPSCD were asked ‘what are your main worries about your child living with sickle cell’ and ‘what would make it easier to manage your child’s sickle cell disorder?’ A thematic analysis of results was performed Home postcodes were used to obtain the IMD centile. This was compared to data obtained from the National Haemoglobinopathy Registry (NHR) as an estimate of average IMD for paediatric patients with SCD for each NHS trust. Results: Overall, 123 adults and 153 children attended the event. Number of respondents are detailed in table 1. - Respondents CYPSCD Carers of CYPSCD 5-10-year-olds 17 29 11-15-year-olds 21 12 16-18-year-olds 8 6 Total 46 47 The following themes were identified as the most common causes for concern among CYPSCD: Pain School attendance and absence Social life Whilst pain and school life were mentioned in all age groups, social life and future were primarily mentioned by adolescents. Feedback from carers reflected similar concerns as the CYPSCD, however they tended to have an additional focus on: Access to care and financial support Specific treatments The future Adult life When asked about how managing their SCD could be made easier, the most frequent response from both CYP and carers was better medication. When comparing IMD deciles of Trust based CYPSCD cohorts with those who responded to the survey, there was no significant difference between IMD deciles. This demonstrates that attendees were representative of the hospital cohorts, confirming the event was accessible to all socioeconomic groups. The results are demonstrated in graph 1.Summary: Public engagement events are a feasible way to better understand concerns of CYPSCD and their carers. Our data suggest that CYPSCD and their carers feel that improved understanding of SCD and its treatments would make it easier to manage their condition, with some mentioning that engagement events are helpful. The event was appealing and accessible for families across the range of IMD deciles demonstrating that this is an effective way to reach out and engage deprived communities. These data could be used to direct services and shape future events.