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PROMs for WM patients

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By taking part in Patient Reported Outcome Measures (PROMs), you can make a difference to WM care and treatment both now and in the future. Here we explain what PROMs are, why they're so important and how you can get involved.

What are PROMs?

Patient Reported Outcome Measures (PROMs) are questionnaires that patients complete on their health and quality of life. Their answers help clinicians monitor individual progress, or help them to understand patients’ needs and improve services for groups of patients.

Questions aren’t related to clinical data like blood tests, but instead focus on things like anxiety, mobility, specific symptoms like nausea or fatigue and even social well-being. There are questionnaires that have been specifically created for patients with cancer.

How is the Rory Morrison WMUK Registry involved in PROMs?

The Rory Morrison WMUK Registry collects data from patients with Waldenstrom’s macroglobulinaemia, to help us gain a better understanding of WM in the UK and improve the lives of people affected by the disease.

The Registry collects clinical data from medical teams relating to things like diagnosis, responses to different treatment and effects of new treatments. It also collects PROMs data direct from WM patients, giving an important ‘real-world’ understanding of the impact of WM in patients’ lives.

What happens with the data collected by PROMs?

Data from WM patients is collected by the Registry every three months. Identifiable information (like names and NHS numbers) is removed for anonymity and the data is collated and analysed.

Over time, clinicians can spot trends or similarities, for example in the ways different patient groups are responding to treatment, or gaps in care that can be addressed.

Why are PROMs so important?

Often what clinicians see in clinic is not what is affecting patients most – the day-to-day impact of a disease or treatment plan, like anxiety, fatigue or reduced mobility. The data collected in PROMs helps clinicians to see these effects.

Clinicians can look at the data in large groups (like all patients with cancer) or more focussed groups (like patients with Waldenstrom’s macroglobulinaemia). They’ll be able to see if patients are reporting similar things, like the same symptom when on a specific treatment regime. This helps them to change the way they care for these groups, from when the best time to start treatment is, to simply being aware of common symptoms.

For example, if clinicians see a pattern of increased rates of depression amongst newly diagnosed patients, they could adjust the format of clinical appointments to include screening for depression. This way they could pick up early signs of depression and find the patient support far earlier.

However, there is currently very little data available specifically relating to WM patients. The Rory Morrison WMUK Registry set out to change this, by starting a WM specific PROMs study. There are now 150 patients registered.

Knowing how patients are functioning on a day-to-day basis can have a huge effect on how clinics are run, how treatments are explained and how support is provided. The more patients who register to the study, the more data the Registry can collect, the better our understanding of life as a WM patient, and the more we can improve care and treatment.

How do I get involved?

The Rory Morrison WMUK Registry’s PROMs study is separate from the main Registry itself. This means that patients can get involved whether their hospital contributes to the Registry or not. If you’re interested in joining the study, simply email the team at registry@wmuk.org.uk for more information on signing up.

You’ll be emailed a link to the Registry’s PROMs questionnaires four times a year. Your responses will be entered into the Registry’s database and used as part of the research into understanding WM.

You can choose to drop out of the study at any time by emailing us. Dropping out of the study will have no impact on the care you receive.

We’re hugely grateful to everyone who has already signed up – you will help to make great strides in improving treatment and care for people affected by WM.

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