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The myeloma treatment journey: What matters most and how satisfied are patients, carers, clinicians, and healthcare decision makers.

Aim of project

The aim of this project is to identify what matters most to patients, carers, clinicians, and payers in the Myeloma treatment journey. Additionally, the project aims to determine how satisfied patients, carers, clinicians, and healthcare decision makers are with each stage of the treatment journey.

Project summary

The NHS is moving towards a patient-centred model of care, in which patients are actively involved in their own treatment and care. In order to make these changes we need to understand what is most important to everyone in the care pathway along with an understanding of what has to happen on a practical level to make change possible.

This study has five stages. Stages 1-4 are complete, with stage 5 ongoing.

  • In stage 1, interviews were conducted with patients, carers, and haematologists to find out which areas of the care pathway are important and how satisfied they are with these areas.
  • In stage 2 a workshop was held to generate a survey instrument to be used in stage 3 of the project.
  • In stage 3 patients, carers, and haematologists completed an online survey about the importance of, and satisfaction with, the healthcare pathway.
  • In stage 4 patients, carers, and haematologists took part in discussions to help us understand the results of stage 3. For example, why were some aspects of the healthcare pathway rated as more important and why were some people less satisfied with certain areas of the healthcare pathway.
  • In stage 5 a workshop will be held with healthcare decision makers to identify which factors influence decisions around commissioning of services and interventions focussed on Myeloma.

Who is involved with the project

Janssen UK has commissioned Community and Patient Preference Research (CaPPRe) to conduct research into the myeloma treatment pathway. Myeloma UK is supporting the project by providing advice and support.

How this project will help Myeloma patients

This project will help Myeloma patients by identifying what matters most and areas where satisfaction with the treatment journey can be improved.

Acknowledgements and funding

This is a Janssen led project which Myeloma UK are providing input on.

Outputs

This project is currently ongoing but to date it has found that there is quite a bit of agreement between patients, carers, and haematologists in what aspects of the healthcare pathway are important. However, there were some differences. For example, whilst 64% of patients indicated that they had good access to treatment all the time, only 15% of haematologists thought patients had good access to treatment. A summary of all the findings will be made available on our website once the project is complete.