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Living with myeloma-related pain

This project was conducted between 2010-2012.

Aim of project

This project aimed to investigate the impact of living with myeloma-related pain and to gain a better understanding of the perceptions of myeloma-related pain between patients, carers and healthcare professionals.

Project summary

Pain is the most common symptom of myeloma and affects up to 80% of patients at some point. It can have a big impact on quality of life, particularly if it is untreated or poorly managed. For many, pain can be frustrating and debilitating affecting them physically, emotionally, and socially and can have a significant impact on carers and family members. However, the extent to which myeloma-related pain impacts on the relationship between patients, their carers, and consultants is not fully understood.

In this project, patients, their carers, and consultants completed a questionnaire about the impact of living with myeloma-related pain to establish if there were differences in perceptions between those who are directly impacted by pain and those who treat and manage it. The results confirmed that myeloma-related pain is a common and debilitating side-effect of myeloma. Managing patient’s pain remains a challenge to healthcare professionals alongside minimising the side-effects and complications of the treatments prescribed to alleviate the patient’s pain.

On a positive note, the results also showed that there is generally good communication and understanding of the patient’s pain between the patient, their carer and their consultant. The majority of patients are honest with their family and friends and their consultant about the severity of their myeloma-related pain.

Who was involved with the project

Myeloma UK contracted an expert independent research company Baccus Consulting to work with us to develop the questionnaire and conduct the research.

How this project will help Myeloma patients

The information and data generated by this project will be used to develop information for patients about pain and pain management. It will also be used to develop information and educational materials for healthcare professionals to improve their understanding of the extent to which myeloma-related pain affects patients and their carers.

Acknowledgements and funding

This research project was supported by an educational grant from Napp Pharmaceuticals Limited.

Outputs

You can read the full report titled Living with myeloma-related pain here.