5612984 AUDIT OF TRUST COMPLIANCE WITH BSH GUIDELINES FOR UTILISATION OF HYDROXYCARBAMIDE IN PATIENTS WITH SICKLE CELL DISEASE

Abstract

Introduction: The British Society for Haematology published guidance in May 2018 on the use of Hydroxycarbamide (HC) in sickle cell disease. HC has been proven to reduce complications in adults and children. HC should be offered to all patients with HbSS or Hb S/B0thal genotype and vaso-occlusive crises (VOC), or end organ damage (not including sickle retinopathy) unless meeting exclusion criteria. Patients with HbSC genotype should also be considered for HC treatment if they suffer recurrent VOC. This audit examined the adult population of sickle cell patients at Croydon University Hospital (CUH). It assessed eligibility for and uptake of HC. It investigated patients’ understanding of HC as a therapy and their motivations around decision-making. Methods: Data was collected by review of documentation on patient electronic records. Eligibility was assessed according to the BSH guideline. An anonymous patient electronic survey was set up and an email link to the survey was sent to 163 patients, to explore their views on HC and the motivating factors behind accepting or declining it. Hydroxycarbamide Audit Results: 163 patients with sickle cell disease were identified (average age: 44.5 years, female to male ratio 89:74). 74/163 patients had HbSS genotype, 3/163 had Hb S/B0 thalassaemia genotype, 83/163 had HbSC genotype and 2/163 had HbSS/HPFH. 73/163 patients were deemed eligible for HC according to the BSH guideline. 60/73 (82%) had been offered HC, 26/60 (43%) had accepted and 34/60 (57%) had declined. The reason for declining HC was documented in 24/34 (71%). 63/77 (82%) of patients with HbSS and Hb S/B0 genotype were eligible for HC. 51/63 (81%) had been offered HC and 22/51 (43%) were taking HC. Patient Survey results: 41/163 (25%) patients responded to the electronic patient survey. 25/41 (61%) patients had HbSS or HbS/B0thalassemia genotype; 22/25 (88%) had been offered HC. 16/41 (39%) patients had HbSC genotype and 3/16 (19%) had been offered HC. In 22/41 (54%) patients, HC had been offered following discussion with a doctor or nurse specialist and an information leaflet given. Reasons for declining HC included concerns around fertility (5), belief that the medication will not offer any benefit (5), ‘hearing bad reports from others’ (3) and reluctance to take pills (2). The main factors motivating patients to take HC were information from a haematologist/specialist nurse (17), complications from sickle cell disease motivating trial of HC (9), discussions with other sickle cell patients (2) and researching the drug online (1). Regarding what support patients felt they needed to make decisions about hydroxycarbamide, these included conversation with individuals who take HC (15), sickle cell support networks/meetings (10), access to online/paper information including clinical trial results (13) and smaller tablets/alternative routes of administration (4). Discussion: The audit showed there is room for improvement in trust compliance with the BSH guideline on HC utilisation in sickle cell patients. It also highlighted important factors contributing to patient decision making regarding HC acceptance or declining. Hydroxycarbamide has a strong evidence base for improving quality of life and reducing complications for people living with sickle cell disease. We should aim to meet the target of offering HC to all eligible patients and to support patients in making an informed decision through facilitating access to information and peer support. Reference 1. https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.15235