Around 38,000 people are newly diagnosed with a blood cancer each year in the UK. Nearly 15% of these patients will be put on ‘watch and wait’, where they’re given a diagnosis of cancer but may never need treatment.
The PHE National Cancer Registration and Analysis Service Conference will explore how data is being used to drive services both locally and nationally. It will highlight how cancer data is improving the prevention, diagnosis, treatment and outcomes of cancer in the UK and beyond.
We submitted an abstract to the conference summarising the findings from our Patient Need research into watch and wait. We were lucky enough to have our abstract accepted and will have a poster at the event on 13 and 14 June in Manchester.
What we wanted to find out
As part of our wider Patient Need research programme we undertook qualitative research to capture the voice of blood cancer patients on watch and wait, focusing on three key areas.
- What their biggest needs are and how they change over time.
- What would have helped – and how and why this changed over time.
- What information would have been useful at this stage?
How we did it
We held four focus groups – two in London, one in Edinburgh and one in Oxford – and spoke to three patients in 1:1 interviews. In total the research in this phase gathered the views of over 30 patients and carers. This phase of research wasn’t meant to reflect the needs of all patients with watch and wait, but to provide an overview of their information needs.
What you told us
Patients mentioned three key areas that need addressing:
Watch and wait appears to be less well known about than other treatment options, yet over 5,000 blood cancer patients each year are expected to be put on a period of watch and wait initially.
Patients have told us they want other people to know about watch and wait and the impact it has on their life. They’d like to be able to inform people closest to them – including family and friends, GPs and employers – and want resources to enable them to do this.
2) Emotional support
Patients on watch and wait often describe their life as an emotional rollercoaster and compare it to coping with bereavement. Especially just after diagnosis, there’s a strong need for emotional and psychological support. This tapers off as patients begin to deal with life on watch and wait but anxiety levels are elevated towards appointment times – for some patients this can be as often as every three months.
Emotional support can come from a professional or from friends and family. Patients also told us they’d like to talk with others in a similar situation to themselves.
Living on watch and wait can be a complex time for patients, and lots of everyday activities and interactions need to be thought about in light of their situation.
For example, patients have indicated they would like information on what vaccinations they can have, what financial support is available to them and advice on holiday and life insurance.
Patients also highlighted a need for information on signs that their disease may be progressing.
Although some patients on watch and wait may never need treatment, they’ve indicated that they want to be kept up to date on the latest research and new therapies that may be available to them.
As a result of what we’ve learned from these focus groups, we’re aiming to develop a digital space that addresses the needs of patients on watch and wait – enabling patients to share information and resources with family, friends, carers, employers and GPs, and access peer-to-peer support.
We’ll promote the space to clinical nurse specialists so that patients know there’s a place for information and support straight from the point of diagnosis.
We’ll also work with partner organisations to raise awareness of watch and wait and its impact more widely.
Thank you to all those patients and carers who spoke to us in the course of our Patient Need research – patients’ views and experiences are at the heart of everything we do.