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RMR WM HRQoL Project

The Rory Morrison WM Registry Health Related Quality of Life (HRQoL)Outcomes Observation Project

Introduction

We are delighted to launch the Rory Morrison Registry (RMR) Health Related Quality of Life (HrQoL) Outcomes Observation project (QoL-WM), which aims to collect information about health and well-being directly from WM patients!

Quality of life (QoL) is a broad term encompassing not just physical health but also mental, psychological and social wellbeing. This aspect of healthcare is often neglected but it has an important impact on day-to-day life.

Health related Quality of Life (HrQoL) is a multidimensional concept reflecting the physiological, psychological and social influences of a disease and its treatment from the patient’s perspective.

It comprises four principal components:

  1. Physical well-being
  2. Psychological well-being
  3. Social well-being
  4. Daily-life functioning.

With the introduction of newer therapies for WM it is important that we understand the impact they are having – both on the survival of patients with WM but also the influence they have on quality of life. For example, many new treatments are taken continuously and indefinitely as opposed to a fixed period of time like current chemotherapy treatments.

Whilst they are effective, it is important to understand whether they have effects that are not captured by standard follow up in the clinic, using blood tests and scans.

The Rory Morrison Registry was designed to capture this important information, and has the capability to record and incorporate QoL assessments within the fabric of the Registry. This can either be done via direct online input by the patient or via paper surveys that are transferred to the Registry by the clinical teams overseeing your care.

With your permission, the RMR can automatically send surveys to you via email every 3 months. This will allow us to observe changes in QoL over time and how that might relate to those on ‘watch and ‘wait’ or those on treatment – whether that be standard chemotherapy or the newer oral Immunotherapies such as the BTK inhibitors.

Registered Centres

 

The following centres are currently participating in the RMR data collection project where your clinician will automatically be inputting your clinical data i.e. diagnostic history, treatments and blood results.

However even if you are seen at the following centres, we still require your explicit consent to store your email address so we can collect data on QoL:

  • University College London HospitalLondon
  • Royal Bournemouth HospitalBournemouth
  • University Hospital BirminghamBirmingham
  • Oxford University HospitalOxford
  • East Kent University HospitalCanterbury
  • St James University HospitalLeeds
  • Royal United HospitalBath
  • Leicester Royal InfirmaryLeicester
  • Freeman HospitalNewcastle
  • Royal MarsdenLondon
  • Nevill Hall HospitalAbergavenny
  • Kings College HospitalLondon
  • St Bart’s Hospital London
  • Northwick Park HospitalLondon
  • The Christies HospitalManchester
  • Torbay HospitalTorbay
  • Hammersmith HospitalLondon
  • Manchester Royal InfirmaryManchester

 

Non – registered Centres

If you are currently not seen at one of these centres, then you can still join the Registry and have your QoL data collected and analysed; however we would encourage you to promote the Rory Morrison Registry to your clinician so that they can register their centre and complete the clinical data to support your QoL data.

Your clinician can get more information about how to register their centre by emailing Registry@wmuk.org.uk.


Consent

If you decide to take part then please complete the form DOWNLOAD HERE with your email address. Please email the completed form to registry@wmuk.org.uk.

By submitting the form you are consenting to having your email address stored as part of the Rory Morrison Registry.

This means that you agree for your email to be stored within the Registry so that we can send you emails about the surveys.

Your email address is required only for the purpose of sending and receiving the online questionnaires; it will not be shared with any other organisation or company.

It will be stored securely within the Rory Morrison Registry, which complies with the maximum level of security required for such projects.

You are under no obligation whatsoever to provide your email address, and in no way will your care be affected by this. If you do agree to provide your email address, you can opt out at any time and we will remove your email address from the Registry completely.

If you have any queries about this project, or wish to opt out and withdraw from both the Rory Morrison Registry and the Rory Morrison Registry Quality of Life Outcomes Observation Project, please email registry@wmuk.org.uk.

You will not have to give a reason why and it will not have an impact on the care you receive.


What happens next?

After signing up to the Rory Morrison Registry Quality of Life Outcomes Observation Project, you will receive an email with a link to an online version of four QoL questionnaires which are widely used in clinical care on the followingfour dates:

  • 1st of February
  • 1st of May
  • 1st of August
  • 1st of November

A reminder will be sent out 2 weeks after these dates if you have not completed the questionnaire.

The four questionnaires you will receive are the:

  • 1.European Organisation for Research and Treatment of Cancer (EORTC) QLQ C30 questionnaire
  • 2.Hospital Anxiety and Depression Score (HADS) questionnaire
  • 3.Brief Illness Perception Score (BIPS) questionnaire
  • 4.EQ5D

These four surveys will form the basis of our observations and every 3 months you will receive an email asking you to complete an online version of these four questionnaires.

The information gained through this project will be analysed by the RMR Team at UCLH, which is the institution with responsibility for ensuring that the Registry complies with the General Data Protection Regulations (GDPR) 2018, which came into force on 25 May 2018.

 

Summary

We are seeking a clearer understanding of how WM patients feel and function on a day-to-day basis. The results will not have a direct impact on your care unless we identify significant concerns about your health through the questionnaires that require intervention.

You have the option to withdraw from the observation at any point.

Any further questions about the HrQOL Observation or the Rory Morrison Registry in general then please visit https://www.wmuk.org.uk/Rory_Morrison_registry_Project2 or contact registry@wmuk.org.uk


Download RMR Fair Processing Notice and Privacy Notice HERE.


Updated May 2019