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Designing new ways of looking after myeloma patients in remission

This project was conducted between 2016-2018.

Aim of project

The aim of this project was to investigate the needs and priorities of patients with multiple myeloma during remission. Additionally, this project sought to investigate the influence of these needs on the design of healthcare systems.

Project summary

Therapeutic advances in multiple myeloma mean that patients have extended periods of remission without the need for active anti-myeloma therapy. The care of patients with myeloma has transformed with the advent of new drugs translating into improved survival outcomes. This means patients are living longer with myeloma and consequently have to deal with the physical and psychological impact of a relapsing and remitting disease. Patients’ needs and expectations have thus changed over the years, however, the traditional clinic model has not evolved in line with these changes. Detailed data is lacking in how care can be delivered in a patient-centred way that meets the current needs of these patients.  To address this gap, this project studied the views and priorities of myeloma patients attending outpatient clinics.

Questionnaires and interviews were used to understand patients attitudes to alternative ways of monitoring their disease (i.e. a telephone consultation, or ‘teleclinic’), instead of coming to see a doctor in clinic.  The results showed that while patients were generally accepting of a teleclinic, they did value having a doctor review their blood tests. Patients appreciated the time and expense saved by having a telephone consultation, but wanted reassurance that blood tests would be reviewed, and there was a system to deal with relapse.

Who was involved with the project

The principal investigator was Professor Kwee Yong at the UCL Cancer Institute. Questionnaires were designed with the help and support from the Health Research Outcomes group (UCL Institute of Epidemiology and Healthcare), and with patient feedback before rolling out to outpatients attending clinics.

How this project will help Myeloma patients

This project has highlighted the priorities of myeloma patients. These results can be used to develop new ways of looking after Myeloma patients.

Acknowledgements and funding

This work was funded by a Myeloma UK Health Services Research grant.

Outputs

This work was presented as a poster at two conferences. You can see the poster presented at the British Society of Haematology conference in 2017 here and the poster presented at the European Hematology Association conference in 2017 here.