We are very pleased to announce that research conducted by Synergy has recently been published by Myeloma UK as part of their landmark A Life Worth Living report – the very first to investigate the hidden impact of delayed diagnosis on the quality of life of myeloma patients in the UK.
Previously, a lack of published evidence has meant that the current cancer policy framework overlooks the impact of a delayed diagnosis of myeloma on patients’ quality of life.
Based on feedback from 1,344 patients and carers, our survey findings show for the first time that myeloma has a significantly greater impact on quality of life for patients with a delayed diagnosis; research also identified the greater impact of myeloma on patients from BAME groups.
Research outputs are being published to complement Myeloma UK’s Early Diagnosis programme and help support an understanding of the importance of the earlier diagnosis of myeloma in the UK.
Myeloma UK summarises the key findings of their report as follows:
- 50% of patients received a delayed diagnosis.
- 49% of patients with a delayed diagnosis suffered a high impact on their quality of life.
- 34% had spinal fractures as a result of delayed diagnosis.
- 60% of patients with a delayed diagnosis reported reduced mobility/physical activity.
- A delayed diagnosis is significantly more likely in younger patients: 48% of patients reporting a delayed diagnosis were aged 18-64, compared to 35% of people with a timely diagnosis.
- Myeloma has a significantly greater impact on black patients and patients from ethnic minorities compared to white patients. 55% of black and minority ethnic patients reported a high impact on quality of life compared to 37% of white patients.
At Synergy we regularly conduct both qualitative and quantitative research with patients to provide insights into attitudes and behaviours, frequently working closely with patient organisations and charities. If you are interested in the insights conducting patient research could provide you with, please do contact us to find out more.