page

Myeloma UK patient experience survey

This project was conducted in 2013.

Aim of project

This project aimed to investigate myeloma patients’ experience of care, treatment, and the impact of myeloma on daily life.

Project summary

From listening to patients and carers through our telephone helpline, patient and family information days, and emails, we at Myeloma UK know that patient experience is often at odds with the recommended best practice. We therefore developed a myeloma-specific patient experience survey to generate a more detailed understanding and a body of evidence that can be used to inform areas where Myeloma UK can have a positive impact.

We asked patients registered on our database to fill out an online or postal questionnaire about their experiences of diagnosis, treatment and side-effects, clinical trials, hospital care and services, information sources, emotional wellbeing, and the impact on employment. A total of 1,062 myeloma patients responded. We found that:

  • Patient experiences of healthcare services once diagnosed are positive yet there are problems in the length of time taken to confirm a myeloma diagnosis and in the ways in which the diagnosis is communicated.
  • Access to a specialist nurse is variable and this impacts information provision at diagnosis.
  • Myeloma affects patients emotional and physical wellbeing as well as their employment both when patients are on treatment as well as off treatment.
  • Fatigue was noted as a significant problem.
  • Support from patient organizations, complementary therapies, and conventional treatment and care were accessed by patients to address the impact of myeloma.

Who was involved with the project

This project was conducted by Myeloma UK and 1062 Myeloma patients participated in this research project. Ipsos Mori undertook the data analysis.

How this project will help Myeloma patients

The results of this survey highlight that patient organisations can play a role in providing information, practical advice, and emotional support. Myeloma UK will use these findings to help support patients and their families.

Acknowledgements and funding

This work was funded by Myeloma UK.

Outputs

You can see a report of this project here.