‘Just one thing’ – what would myeloma patients change about their treatment and care?

Jess Turner, from the Clinical Practice Services (CPS) Team at Myeloma UK, presented a poster entitled ‘Just one thing – what would myeloma patients change about their treatment and care?’ at the 62nd Annual Scientific Meeting of the British Society for Haematology 2022.

The poster summarised data collected from patient surveys as part of the Clinical Service Excellence Programme (CSEP) accreditation process. The survey, comprised of 26 questions evaluating patient experience, ends with an optional, open-ended question ‘If you could change one thing about your myeloma treatment and care, what would it be?’

The CPS team analysed the responses from 664 patients at the 41 hospitals who participated in CSEP between 2015 and 2021 to the question ‘If you could change one thing about your myeloma treatment and care, what would it be?’

Most of the responses were positive, with 268 responses giving negative or constructive comments.

Further analysis showed that the 268 constructive comments could group into eight thematic categories.

Nearly a quarter of the responses related to the length of waiting time in clinics and pharmacies. The CPS team considered that increased wait times might reflect greater numbers of myeloma patients being monitored due to improvements in survival rates and an increase in available treatments.

Other key areas where patients wanted to see change related to NHS logistical problems with an overarching theme is continuity of care between departments and primary care. A fifth of responses indicated a need for improvements in communication with healthcare professionals, and a further fifth wanted to see better coordination of care. This feedback is valuable for informing hospitals’ service development plans.

The CPS team gathered patient experience data between 2015 and 2021 through our Clinical Service Excellence Programme (CSEP). Most of the comments captured were pre-pandemic. Now that telephone clinics and treatment home delivery are becoming more widespread, it will be interesting to undertake further research to see how this affects concerns about wait time and communication.

Collectively, the survey results from hospitals across the UK contribute to a broader understanding of myeloma patients’ experiences and what matters most in their treatment and care. This data is being used to facilitate improvements in clinical practice and outcomes via CSEP.

CSEP is a Myeloma UK best-practice initiative designed to support hospitals in delivering services that are patient-focused and responsive to individual needs.

It was established in 2015 to recognise when superior care is given to myeloma patients, share best practice initiatives, and benchmark optimum standards in myeloma treatment. To view participating hospitals, please visit the CSEP website.

For more information on how your hospital can apply, please contact csep@myeloma.org.uk.