The experience of blood cancer patients on a period of Watch and Wait


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Lauren Dias1,Matt Kaiser1
1Bloodwise

Abstract

Background

Blood cancers are the 5th most common cancer. Over 38,000 patients are expected to be diagnosed each year with a blood cancer and nearly 15% of these patients will be put on a treatment of Watch and Wait.  As part of our Patient Need (PN) work – we spoke to this group of patients to identify what their experiences were of being on this type of treatment.

Method

We initiated a series of qualitative work to capture the voice of people affected by blood cancer on a period of watch and wait. This included; 3 focus groups, 2 clinician and 2 patient in-depth interviews, and desk based research.

Results

Results showed that there are three key areas that need addressing:

  1. Awareness:This type of treatment appears to be less well known about, patients have told us they want other people to know about this type of treatment and the impact it has on their life.
  2. Emotional support: Patients on watch and wait often describe their life as an emotional rollercoaster and compare it to coping with bereavement. At the beginning, patients have indicated 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.
  3. Information: Living on watch and wait can be a complex time for some patients, and a lot of everyday activities and interactions need to be thought about in light of their situation. 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.

Conclusion

As a result of this research we hope to build a digital space available for anyone on or affected by Watch and Wait, featuring general information, practical support, and emotion wellbeing support.