How are people affected by being on ‘Watch and Wait’?
We talked to patients with chronic blood cancers, and some of their family members, about what it is like to be on Watch & Wait (W&W).
Following diagnosis, patients often begin with a period of W&W, a process that involves attending haematology clinic for monitoring (also known as observation), and only receiving treatment if and when the cancer progresses. Following treatment, patients generally enter another period of W&W, and so on.
There is a considerable difference between W&W and other approaches to managing cancer. For example, where treatment is an obvious choice, the speed with which it starts is regarded as critical, particularly in terms of ensuring the best outcomes; whereas this is not the case for W&W. In this research we asked interviewees how their cancer diagnosis had affected their life and health, and any changes it had brought about as a result.
As expected, people reacted differently to news of their blood cancer diagnosis and the way it was to be managed. Some were accepting and relieved that they did not require treatment straight away, and may never need it at all. This attitude could act to minimise the impact of the cancer, enabling a regaining of control and adoption of a ‘carry-on regardless’ attitude, whereby difficulties such as progression would be faced if and when they arose.
Other people found their diagnosis profoundly shocking and difficult to comes to terms with, and it often invoked troubling thoughts about their own mortality. Some patients did not fully understand why they hadn’t received treatment from the outset. This could put them off discussing their diagnosis with others, and they might miss out on support from people close to them. Reactions were often closely connected to their relationships with family and friends, and whether they felt well supported.
Ongoing anxiety and distress
Those struggling with their diagnosis often experienced psychological difficulties because the risk of progression was unknown. This left them facing an uncertain future. Psychological difficulties were also linked to feelings of responsibility for monitoring their own symptoms to in order to identify when the cancer started advancing. There was also increasing worry in the time leading up to haematology check-ups, which could cause sleepless nights.
The result of these worries was growing anxiety and distress, which could be severe and prolonged, eventually reaching a point where it had a greater impact than any physical symptoms from the blood cancer itself. Furthermore, a minority had to cope with such issues while living alone, or without a network of family and friends to share their worries, provide support and ease their anxiety. Being alone could make these feelings worse.
Individuals described differences in the way W&W was explained to them. Many reported excellent empathic care from Health Care Professionals (HCPs), who often took time to explain the likely future uncertainty; although some reported instances when they felt they were being hurried or given insufficient material to be on top of the situation.
As theirs was a chronic condition (unlike other patients they encountered in clinic), some felt they didn’t merit, or receive, as much time and attention as those who were more seriously ill. Associated with this were the long gaps between hospital visits that are common during monitoring, but can result in patients sometimes waiting months for answers to questions arising in the intervening time, thereby heightening anxiety and worry. Some were hesitant about directly contacting specialist nurses, in case their query was considered ‘petty’, or because they felt that the acutely ill patients should be prioritised.
Need for extra support
A few people thought there was a lack of awareness or understanding amongst some HCPs about the impact that their chronic blood cancer and monitoring via W&W was having on their daily lives, mental state, and family relationships. It was suggested that there was a need for patients who are struggling to be signposted to extra help and resources.
A further group that may require extra support were those facing the cancer on their own, either because they lived alone, they did not wish to be a burden to family or friends, or they were not particularly well supported by those who were around them. The need for someone known and trusted to talk to, who would support them and act on their behalf during important conversations with HCPs, was clearly conveyed in numerous interviews.
The study identified a broad spectrum of reactions to being diagnosed with a chronic blood cancer that was managed through W&W. Whilst many instances of excellent practice and trusting relationships between patient and clinicians were recounted during interviews, there was also a strong theme of anxiety and distress running through patients’ accounts. This indicates that patients have needs that are not currently being fully addressed, which aligns with some perceptions that the impact of living with a chronic blood cancer is not altogether acknowledged by HCPs. Further monitoring of difficulties (particularly psychological), along with appropriate signposting to sources of help, is likely to contribute to better outcomes.
A note on how we undertook the research
We spoke to 35 patients in depth about their experiences (10 with relatives), all of whom were treated in the 14 hospitals that are part of the Haematological Malignancy Research Network, where care is delivered according to national guidelines. Patients enter the network at diagnosis (roughly 2,400 annually), and have diagnostic, prognostic and clinical data (including all treatment and responses) collected from their NHS medical records. They are then invited to become further involved in our work, and to talk to our researchers about their experiences.
More than half of blood cancers fall into the “chronic” category; these conditions are currently incurable, but they are treatable. In the present study, patients were chosen from the four most common chronic conditions (chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma). To capture as broad a range of views as possible, we included: patients who were newly diagnosed, those who had been living with the cancer for many years whose perceptions may have altered over time, those who had been on W&W for many years, and those who had received treatment. To counteract the influence of memory/recall, we encouraged the use of diaries and contributions from relatives.
The views of our participants are unlikely to reflect those of the entire population of patients with these diseases. Nonetheless, it is highly likely that most of our findings are transferable to other patients, UK areas, and also countries with similar health-care infrastructure and universal health-care coverage.