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G15(P) Parental understanding and concerns regarding hydroxycarbamide as a disease modifying agent in sickle cell disease within the paediatric population

Aims Robust clinical evidence of safety and efficacy supports the use of hydroxycarbamide in children with sickle cell disease (SCD) leading to its use becoming globally accepted in clinical practice. Despite proven efficacy, low toxicity, clinical consensus and low cost, there are reports of underutilisation of hydroxycarbamide in SCD. Possible causes include provider, patient and systems level barriers. Our project sought to determine whether parental barriers in the use of hydroxycarbamide existed in the UK and whether its uptake has been affected as a result. Additionally we investigated clinicians’ views of hydroxycarbamide utilisation and barriers to its use in children; parental knowledge and parental concerns regarding hydroxycarbamide, and sources of drug information utilised by parents of children with SCD. Methods A multi-method approach was used, including a survey of clinicians, parent questionnaires and parent focus group meeting. Results We surveyed 150 members of the UK Forum of Haemoglobin Disorders in order to obtain clinician views of parental concerns regarding hydroxycarbamide. Clinicians were asked to rank parental views on hydroxycarbamide use. Of the 25 respondents, 68% ranked ‘concerned but willing to accept therapy’ as the commonest parental response, see Figure 1. Some clinicians indicated that a degree of provider barrier, in the form of highlighting of rare adverse effects discouraged parents to consent for treatment. Perceived concerns were its effect on fertility, potential carcinogenicity and need for frequent monitoring.Abstract G15(P) Figure 1 Clinicians’ perception of parental response to the initiation of hydroxycarbamide treatment We surveyed parents regarding their existing knowledge of hydroxycarbamide by means of a questionnaire. We found knowledge to be limited despite being mainly derived from NHS sources. Additionally, some parents indicated that their concerns regarding the safety of the drug had affected their decision to consent for treatment, see Figure 2.Abstract G15(P) Figure 2 Parental questionnaire responses regarding various aspects of hydroxycarbamide use in children Focus group discussions involving nine families echoed the clinician surveys with mixed views on efficacy and safety (Figure 3).Abstract G15(P) Figure 3 Parental focus group views of hydroxycarbamide treatment in children Conclusion Our results indicate that parental concerns regarding safety and efficacy of hydroxycarbamide is prevalent and may be creating a barrier to its uptake in the UK. More work is needed with larger number of participants to accurately understand the barriers to acceptance of hydroxycarbamide therapy in order to improve hydroxycarbamide uptake in children.