Utilising Patient-Reported Experience Measures to Drive Healthcare Improvements: The Application of Validated PREM Survey Tools in a Haemoglobinopathy Network in South London

Background: The healthcare experience of sickle cell disease (SCD) patients in UK National Health Service (NHS) hospitals has been reported as poor. Patients experience delays in receiving pain relief, perceive lack of knowledge about SCD among healthcare providers (HCP), and are subjected to allegations of drug seeking behaviour. Aims: We aimed to improve patient experience and minimize inequity of care provision within our network by using validated patient reported experience measure (PREM) tools in a large clinical network. We report on findings of two successive cycles of PREM surveys, conducted five years apart, with PREM-informed quality improvement (QI) projects during the intervening period. We report on some of the QI projects undertaken based on survey responses and assess the utility of such tools in driving service improvements in the NHS. Methods: The Southeast London and Southeast (SELSE) Haemoglobinopathy Network comprises four specialist haemoglobinopathy teams (SHT) located in five NHS hospitals, serving approximately 4,000 patients with SCD. Three validated survey tools, each containing 33 to 35 questions, were administered to adults, children, and carers of children with SCD. We applied a targeted communication strategy using posters and newsletters and continued to collect responses until we reached approximately 10% of our cohort. We analysed the responses across five domains: specialist care, emergency care, ward-based care, information, and support. Each response was coded for statistical analysis as a ‘problem score,‘ indicating the presence or absence of an issue, defined as an aspect of healthcare that patients felt could be improved. For external benchmarking, we used survey responses from a national pilot study in 2016 (Chakravorty, 2018). Internal benchmarking was conducted through longitudinal comparisons of each SHT over the two survey cycles. Results: We received 390 and 430 survey responses in 2018 and 2023 respectively with over 20,000 answers. The key problems emerging across the network in the 2018 survey were: SCD knowledge among HCP and timely pain relief in ED, information about SCD treatment options, availability of child-friendly information, chance to meet other people with SCD and SCD related information sharing. Several QI projects were initiated following this survey. Thematic analysis of ED process mapping in one SHT highlighted need for sustained staff education. To improve the effectiveness of pain relief and quality of empathic and informed care in ED, patient co-produced videos were developed and incorporated into mandatory training for staff. Mean problem scores were higher in all surveyed groups in 2023 compared with 2018. Lack of psychological and peer support, and information about treatment options was consistent among all respondent groups. Internal benchmarking across the two surveys showed improvement in some domains such as knowledge of SCD in ED in one SHT where an education drive was undertaken. Another SHT demonstrated fewer problem scores in the specialist domain in the 2023 surveys following the employment of specialist senior staff. External benchmarking to the 2016 national survey showed fewer problems across all domains in both survey cycles. The survey results, along with agreed service improvement plans, were distributed to patients via infographics. Discussion: The 2023 surveys show a decline in care experience as the NHS struggles to recover from the pandemic, facing longer emergency department wait times and deteriorating elective care activity. This has also been a time of the ‘cost of living crisis’ affecting the poorer areas of the UK, in which our network has a significant representation. We did not survey the same 10% of our cohort, and it is possible that there has been some response bias, with only those with poor experience of care responding to the surveys. Conclusion: Internal benchmarking has demonstrated that patient led QI initiatives and focused improvement can improve patient experience, although it is likely that external factors may also affect quality of care. Several national SCD improvement projects are currently under way. We will continue to undertake continuous QI methodology (5-D's-define, describe, design, deliver, digest) to ensure sustained improvement in patient- reported areas of service deficit and use PREM tools to inform further service development initiatives.