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Helping patients to be more involved in treatment decisions

Aim of project

The aim of this project is to improve Myeloma patient outcomes by enhancing communication and facilitating shared decision-making by patients, carers, and health care professionals. This project aims to deliver a shared decision-making patient preference tool for the myeloma clinic.

Project summary

Current treatments for myeloma can prolong remission and improve quality of life for patients but they can have side effects. As such, patients can often be faced with difficult trade-offs in deciding on a treatment option. This project will develop a mobile App that will allow patients to consider potential treatments and their impacts. Patients can then use this information to support decision-making when discussing treatment options with their health care provider. This means that patients will have greater input, involvement and control over the management of their condition and their choices for treatment.

The App will allow clinicians and newly diagnosed patients to work through hypothetical questions about potential treatments in clinic. The app would then generate real time output (dashboards), which would allow patients to see what characteristics of treatment they value and the level of risk (in the form of side effects for example) that they may be willing to accept from a treatment. Patients will also be able to use this app outside of the clinic, allowing them to consider potential treatments and their impacts prior to discussions with their clinician.

This project has three stages:

  • In stage 1 (currently ongoing) patients and health care professionals are providing input on the design of a mobile App that will be used to assess patient preferences.
  • In stage 2, the App will be built.
  • In stage 3, the App will be ready to use and will be reviewed by patients, family members, and health care professionals.

Who is involved with the project

Myeloma UK and CaPPRe will be designing the study with input and feedback from patients and health care professionals. CaPPRe will develop and tailor the app.

How this project will help Myeloma patients

The use of the App to facilitate shared decision-making has many potential positive outcomes. Patients will have greater input, involvement, and control over the management of their condition and their choices for treatment. The results of treatment regimens may more closely align with patient and carers values and needs. It will also be possible to track treatment preferences over time (for example from diagnosis through the range of treatment stages).

Acknowledgements and funding

This project is funded by Novartis.

Outputs

This project is currently ongoing but will produce a mobile App.