Evaluating the Impact of Patient-Centred Services to Improve Quality of Life of Those Affected By Myeloma and Related Conditions

Myeloma is a relapsing-remitting cancer that is currently incurable. Patient need of this cancer group is considerable and often differs from solid and curable cancers. The support required from patients is often more than the NHS can accommodate and so patients and those close to them can be left with gaps in their care. This was particularly evident during the coronavirus pandemic, where care changed rapidly and healthcare provision was diverted to the pandemic efforts.

Myeloma UK exists to support people affected by myeloma. We provide a range of information and support services, including a telephone helpline, email service, written information, events, Support Groups and peer services. These services are free to access and are signposted to by healthcare professionals. They complement the services provided by the NHS and aim to bridge gaps in support.

During the coronavirus pandemic, our services were heavily used by patients and loved ones seeking more information and support. To ensure we were providing the support people needed, we evaluated our services with an online survey. This survey was available to be completed at any time, but was publicised at intervals throughout the year.

The results of the survey were that 97% of service users would use the service again and 98% would recommend our services to another person affected by myeloma. On average, for those who had needed it, 96% felt they were better informed after using a service, 92% felt more confident in making decisions about their treatment and care and 89% felt better equipped to live well with their diagnosis. 88% of users were less anxious and 80% felt they had a better quality of life. These results show our services are not just well regarded and of high quality, but they increase people's wellbeing.

"The support they give is invaluable and enables those who contact them to deal with many issues on many levels, be that emotional, mental or just general information that they need to be supported."

"I just felt generally a bit more confident about handling the coronavirus crisis, especially in doing my own risk assessments, and not being pushed by well-meaning friends who don't understand myeloma."

The patient services provided by Myeloma UK show a tangible positive impact on people's lives as they live with myeloma and can help support the care they receive from their healthcare professionals. We will continue to monitor and evaluate our services to ensure we maintain and improve on the support and information we provide to all those affected by myeloma and its related conditions.

Baron:Janssen: Honoraria; Takeda: Honoraria.