S128: CONTINUOUS QUALITY IMPROVEMENT IN PAEDIATRIC SICKLE CELL DISEASE
Authors: E Ahemad, R Mitchell, M Goridari, I Wood, S Mahmood, S O’Driscoll, A Cortes, S Chakravorty
Journal: HemaSphere (2022)

Background: Sickle cell disease (SCD) is characterised by severe episodic pain requiring prompt and effective analgesia. However, SCD patients frequently experience poor quality of care due to lack of awareness of the condition among non- specialist staff, pre-conceived biases and unfounded allegation of drug-seeking behaviour. Several reports and surveys using Patient Reported Experience Measure (PREM) tools indicate widespread prevalence of ineffective pain relief in emergency department(ED), poor access to psychological therapies and poor funding for service development. Aims: To use a validated PREM tool to survey patients or carers of sickle cell disease within the paediatric service of a Specialist Haemoglobinopathy Team. To use an established Continuous Quality Improvement (CQI) methodology (5-D’s-define, describe, design, deliver, digest) to ensure sustained improvement in patient- reported areas of service deficit. Methods: The PREM survey was conducted as part of a network- wide initiative in 2018. The survey responses were analysed and problem scores created for specialist care, emergency care, ward-based care, information and support. These problem areas were categorised into domains where further improvement action was needed. CQI tools were used to map the patient journey within Emergency Department (ED) when presenting with pain followed by thematic analysis to identify potential improvements in the patient journey. Results: The PREM survey analysis identified three domains for improvement: Domain A: To improve the effectiveness of pain relief and quality of empathic and informed care to paediatric sickle cell patients and their families in ED. We developed multi-disciplinary teaching videos with patient involvement and patient information material based on ED/pain/sickle staff feedback. Excellent engagement from all staff groups obtained. Patient involvement in ED teaching video was well received. Thematic analysis of ED process mapping highlighted need for sustained staff education and re-writing ED pain protocol to align with current practice. Pre-conceived biases were identified among staff with respect to attributing drug-seeking behaviour to patients during severe sickle cell pain. Domain B: To improve the information presented to children regarding SCD and the care services available in our trust We developed child friendly Information leaflets targeting primary school age and secondary school age readers Domain C: To improve the availability of, and access to, mental health services for paediatric SCD patients. We developed virtual parent support groups and psychological health screening for adolescent patients in clinics. We organised a ‘Tree of Life’ (ToL) patient empowerment workshop. The parent support groups were well attended. Plans are in place to continue ToL workshops and support groups on a regular basis. Future work: A rapid improvement workshop is being planned to engage a wider multi-disciplinary team to engender a culture of empathy in line with our trust values. Further input from workshop is expected to identify and implement sustainable goals. We plan to undertake a repeat PREM survey following the end of this CQI project to understand the impact and the implemented improvements. References 1. Chakravorty, S, et al (2018) Archives of Disease in Childhood, 103 (12), pp. 1104–1109. 2. All Party Parliamentary Group in sickle cell and thalassaemiareport: No one’s listening(https://www.sicklecellsociety.org/wp-content/uploads/2021/11/No-Ones-Listening-PDF-Final.pdf) 3. Peer Review Overview Report 2020(https://haemoglobin.org.uk/wp-content/uploads/2020/11/Adult-and-CYP-HD-Overview-Report-2020-V1.pdf)