Challenges involved in collecting and analysing the reported experiences of patients with lymphoedema

The Lymphoedema Wales Clinical Network, known as Lymphoedema Wales (LW), provides a local and national service to all people in Wales who are at risk of, or diagnosed with, lymphoedema. This includes ensuring patients are supported to manage their condition through local access to expert assessment, advice and treatment. As part of the ‘value-based healthcare’ (VBH) initiative, LW supports high-quality care that is not wasteful and is based on what matters most to patients. The Lymphoedema-specific Patient Reported Outcomes Measure (LYMPROM^©) has been instrumental in developing a PROM-led service. However, this is by no means the sum of value-based projects being undertaken. There have been weak positive correlations observed between patient-reported outcomes and experiences (Black et al, 2014), with the strongest associations between communication and outcomes. Thus, a key focus for LW has been communication strategies. The newly developed LW Patient Advisory Panel provides valuable oversight on the programmes of work and service developments undertaken. Bolstering the patients' voice across all areas of care, a Lymphoedema-specific Patient Reported Experience Measure (LYMPREM^©) is routinely collected by all lymphoedema services in Wales. LYMPREM is used as an important indicator of quality (Kingsley and Patel, 2017), while supporting co-production of service developments and quality improvement initiatives (Withers et al, 2021). This article provides a summary of the opportunities and challenges identified by LW when using LYMPREM nationally. It also provides an example of PREM data being implemented in health care (Jamieson Gilmore et al, 2023).