Chronic lymphocytic leukaemia (CLL) is the most common adult leukaemia in the western world; it is incurable and typically occurs in people aged over 60 years (Mukkamalla et al, 2023). The average age at diagnosis of CLL is 71 years and it is more common in men (American Society of Clinical Oncology (ASCO), 2017). Diagnosis is usually discovered incidentally when lymphocytosis is observed in a complete blood cell count (Muchtar et al, 2020).
Patients with asymptomatic, early-stage CLL are managed with a watch and wait (watch and wait) or active surveillance strategy, and treatment started only with symptomatic disease (Hallek et al, 2018). This follows evidence from clinical trials showing no advantage in survival from treatment of chlorambucil and fludarabine versus placebo in asymptomatic CLL patients (Dighiero et al, 1998; Hoechstetter et al, 2017) or with watch and wait versus early treatment with fludarabine, cyclophosphamide and rituximab (Herling et al, 2020). Moreover, although the recent results from the CLL12 clinical trial, which compared ibrutinib with placebo, show a higher progression-free survival in patients receiving ibrutinib, further results are needed to demonstrate an advantage of ibrutinib over observation in overall survival (Langerbeins et al, 2019).
However, it is known that CLL patients on watch and wait report effects on their quality of life. Using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire, Youron et al (2020) highlighted that patients on watch and wait (n=52) reported significant impacts on their global health status and worries about their future health and functioning. Using the EORTC QLQ-C30 on a sample of 144 patients with CLL, Holtzer-Goor et al (2015) found that health-related quality of life for those receiving no treatment (n=59) was lower than that of patients with CLL on active treatment. Moreover, Levin et al (2007) reported similar levels of depression and anxiety and a negative impact on quality of life among patients on watch and wait versus those being actively treated, with younger patients on watch and wait being more anxious than their older counterparts.
A recent scoping review on active surveillance in patients diagnosed with CLL, renal cell carcinoma, prostate cancer and ductal carcinoma by Kim et al (2018) included 73 studies, with just four including patients with CLL (Levin et al, 2007; Evans et al, 2012; Holtzer-Goor et al, 2015; van den Broek et al, 2015). The review concluded that all patients on active surveillance were dissatisfied because supportive care was lacking (Kim et al, 2018).
Only one qualitative study was found exploring the experiences of patients with CLL on watch and wait. Evans et al (2012) interviewed 12 patients with CLL, six of whom had received treatment since their diagnosis and were interviewed solely based on having begun their CLL trajectory on watch and wait.
There is a dearth of qualitative research exploring the experiences of people living with CLL on watch and wait. This study aimed to offer further insight into the experiences of people living with a diagnosis of CLL and on a watch and wait approach.
Method
Study design and sample
A descriptive, qualitative study was conducted, with analysis informed by systematic text condensation (Malterud, 2012). The standards for reporting qualitative research were followed (O'Brien et al, 2014)
Using purposeful sampling, the authors sought to recruit participants with CLL who had been on watch and wait for at least 2 years and who had not received any active treatment. Recruitment was initiated by advertising on the social media accounts of CLL Ireland, as patient-led advocacy website.
Data collection
Twelve people with CLL contacted the first author expressing an interest in participating. Four were ineligible; three were on watch and wait with a diagnosis of small lymphocytic leukaemia and one was receiving treatment for CLL. One did not return their consent form. A total of seven participants were included.
All seven interviews were undertaken between January and March 2021 by the first author (CD) by phone or MS Teams, depending on each participant's preference. A pilot interview was undertaken before data collection to ascertain clarity and sequence of questioning.
An interview schedule was used, with the opening questions asking participants what they understood about the watch and wait approach for CLL. All interviews were audio-recorded and transcribed verbatim. Interviews ranged in duration from 14 to 38 minutes (average 28 minutes). Transcripts were not returned to participants for member checking; however, at the end of the interview, a summary of the issues discussed was relayed back to each participant to verify that an accurate account of what they had said had been captured. Data saturation was achieved following seven interviews (Kvale, 1996) so further efforts to recruit more participants were not undertaken.
Data analysis
Analysis was guided by systematic text condensation, a descriptive phenomenological method that reviews participants' dialogue without looking for additional hidden meanings, and acknowledges the importance of researcher reflexivity and bracketing (Malterud, 2012). The first (CD) and final (MD) authors undertook the analysis. When using systematic text condensation, it is advised that more than one researcher should undertake analysis ‘not for consensus, but to create a wider analytic space’ (Malterud, 2012: 797).
The first author is a female specialist haematology nurse, with a variety of experiences in caring for patients receiving treatment for CLL and was not known by any of the study participants. The final author has a clinical background in haematology nursing and is an experienced qualitative researcher. A reflective diary was kept by the first author throughout the study and used to frame discussions with the second (MG) and final authors.
Analysis in systematic text condensation involves a four-step approach. First, because a phenomenological approach is holistic, the data are read in their entirety in an attempt to understand entire descriptions and then again with the aim of identifying meaning units focused on the phenomenon of interest. Second, these meaning units are examined in terms of psychological insight and those that are relevant to the phenomenon are systematically abstracted. Third, the researcher then employs reflection and imaginative variation to transform the meaning units into descriptions that capture the phenomenon clearly. The final phase of analysis involves synthesising the meaning units into overall themes that describe the phenomenon (Malterud, 2012).
Ethical considerations
The study was approved by the college ethics committee affiliated with the first and final authors (ref 24/11/20 CD/BMC). All participants provided signed informed consent forms. A distress protocol was prepared in the event of any participant showing distress during the interview; none expressed this.
Results
Participants' characteristics
Seven participants were interviewed. Six were male and six were aged over 50 years. The one woman was aged 50 at the time of the interview and had been diagnosed at the age of 45 years. Most (n=5) had been on watch and wait for 4-6 years. Four were in full-time employment and one had taken early retirement to pursue full-time further education. All were married (Table 1).
Table 1. Participants' demographic characteristics
| Characteristic | n=7 |
|---|---|
| Sex | |
| Male | 6 |
| Female | 1 |
| Age | |
| 41–50 years | 1 |
| 51–60 years | 4 |
| 61–70 years | 2 |
| Length of time on watch and wait | |
| 4–6 years | 5 |
| 8–10 years | 2 |
| Location in Ireland | |
| East | 3 |
| North west | 2 |
| South east | 2 |
Wait and worry
All participants spoke of how their CLL diagnosis had come ‘out of the blue’. They were shocked by the diagnosis as they felt healthy and were not showing any signs or symptoms. At the time of diagnosis, they understood that watch and wait was suitable as they had a ‘mild condition’:
‘I was a very healthy person until the doctor diagnosed this. I was very, very healthy all my life, you know. And suddenly, out of the blue, random, for no scientific reason, I get this.’
Participant 4
‘It was a random blood test for something else – the doctor did a blood test and it just got picked up.’
Participant 7
‘I'm very early stages of it. I was only, the first time I got bloods done, and [hesitates] just to get the bloods done more for what do you call it, cholesterol… And then they sent me out then, they wanted to see me, whoever, wanted to see me… they said leukaemia, at the time or whatever… And that frightened the life out of me at that stage.’
Participant 5
‘I think at the initial diagnosis, there was sort of a shock to be told you know this healthy 51-year-old man had cancer. I mean… is there a mistake, is there something? … I left that initial meeting with my specialist just probably in a state of shock.’
Participant 3
‘Watch and wait’ was experienced as ‘wait and worry’. Participants described how the watch and wait approach resulted in feelings of anxiety:
‘I was told I have CLL. I was told that the preferred option for me at the time was wait and worry or wait and watch… They're just putting it on the long finger. I was, they're surely that can't be right?… And this was a real concern of mine, you're just told, you've just been told you have a leukaemia and they're not doing anything about it. And I for one wanted something to be done about it immediately. What's the point in hanging on, let's get this done now, which has always been my way in life. I'm a person who always wants to get things done and done now… Well, why aren't we talking about treating this?’
Participant 3
‘With watching and waiting or [hesitates] as the creeping effect of [hesitates] this disease I [hesitates] don't know whether I'm feeling good, bad, or indifferent [laughs].’
Participant 6
Uncertainty over the future prevailed with a watch and wait approach. Participants felt frustrated about not knowing what the future entailed for both themselves and their families:
‘You know, it's, you have to carry around a burden like that with you. It's the not knowing is the whole thing … It's the indecisiveness and, you know, what do I do, where is this going to end up? Well, it just plays on your mind… it's just dragging on and on and on for me. As I say, it's 5 years now, I just feel it's too long really.’
Participant 2
‘So, it was better for them [family] to be forewarned about, you know, the possibility that I could be unwell or that I could die from this.’
Participant 1
‘I don't know maybe [sighs] about what the future predicts, I can't say, I don't know. Are we better off not knowing? I don't know. I mean, if someone told me you have X, Y, you have 6 months or a year, is that better than not knowing? I don't know.’
Participant 7
Seeking information
A lack of information, especially at the time of diagnosis when being told about the watch and wait approach was a feature of all participants' experiences:
‘I didn't receive any information. No, it was just… I went down to [the haematology consultant]… and she just told me that they would keep monitoring it every 6 months.’
Participant 5
‘So [hesitates and pauses], to go back now, would I have asked more questions at [hesitates] that initial meeting or, well yeah, the initial meeting, with my specialist? Yeah, I would ask a lot more questions. But now that I'm sort of nearly five and a half years into this, any time we do meet I always do have a list of questions.’
Participant 3
‘I think it's 5 years since not 4 years, it's 5 years this year. They gave me a leaflet on it but there wasn't that much on it. I mean I looked at it.’
Participant 7
Not only was information not provided at diagnosis but also advice was given not to look up any information because the diagnosis was uncertain:
‘And I said, can I have some information about CLL?, and he [the haematology consultant] said I don't want you looking up anything about it until we know for sure. Hmm, and that was the end of the conversation … I totally understood by the way, the consultant saying don't be looking things up. That was very wise but his mistake, I feel, was not giving me something. Because you're not going to leave it – you're going to want something.’
Participant 1
Despite consultants' advice to avoid searching the internet for information on CLL, this was ignored in attempts to become better informed:
‘As soon as I got home after him [the haematologist] advising me not to do that because there's nothing worse than a Google doctor, in his mind anyway. But I needed to know, and he wasn't providing me with the details that I needed and the Irish Cancer Society had quite a lot on it and it was very informative. And then, through just browsing and looking up the web, I kind of built up what I knew about it, what I thought I would know about it and that's what I know to date… I remember asking something, it was monoclonal something, I can't remember the terminology, I have it here in my phone, but I remember asking the – what do you call it? – the haematologist about it, and she was very dismissive in that she knew what was wrong with me, and you know [small laugh] I shouldn't, I shouldn't be a Google doctor etc etc.’
Participant 6
Participants recalled being consumed by information while searching on possible treatments. Even though they knew they might never receive these treatments, the urge to search was too strong to resist. Some were very informed on current treatments and eagerly shared their information on new and ongoing research of novel therapies during their interviews:
‘Like, the whole, the different medications that have come out, firstline treatment, I know not in Ireland, but in the UK, all those biological agents and then the CAR-T treatment… you can learn all about it, but it might not be relevant to me for another how many other years and then I'm gonna have to go and I just felt it can become a bit all consuming.’
Participant 1
‘I didn't receive a lot of information. A lot of that was self-obtained via the internet and CLL Ireland and a couple of others… The only problem with the one in the US is that the treatments are considerably different in the US and they seem to be far more advanced in the US in what they are treating with.’
Participant 3
Despite the feelings of anxiety and uncertainty described by participants, one showed signs of being self-informed of the treatments available when he declined cyclophosphamide and rituximab after 2 years of watch and wait in the belief that he ‘didn't think it was the path for me’. He was planning to discuss further treatment at his next clinic appointment:
‘On my next visit. I'm thinking that way. I am going to get clarity on stuff because I'm just I'm going to say, look here, I have been waiting 5 years now you know… If there are other therapies out there for me that would give me the same or maybe even better without pumping poison [chemotherapy] into my body, then I will go for that.’
Participant 2
Feeling like an imposter
Participants highlighted that, as watch and wait does not involve active treatment, there was a feeling of being an imposter. They also did not feel unwell as they did not display symptoms of illness. For these reasons, they expressed the need to keep their diagnosis private and only very close family members were aware of it. Participants also did this as they did not fully understand their diagnosis and felt awkward having discussions about it outside close family:
‘I decided that, because I wasn't feeling bad and because I wasn't feeling ill, I wasn't going to worry anybody. Well, my wife knew about it and my son and daughter and their partners but they are the only ones … the rest of my family are totally unaware of it.’
Participant 6
‘Of a family of maybe 20 people, yeah, they're the only two who would have been like, yeah, we're aware of [names himself] problem and what stage you're at.’
Participant 4
‘I have an incurable cancer being CLL and s*** they're not doing anything about it [laughs] … I call my wife my carer but she is not caring for me cause I'm not sick [laughs]… We [family] tend to keep it relatively private.’
Participant 3
‘And I was the anomaly. I was somebody who hadn't yet had treatment. And when people were sharing information, I felt a bit of an imposter. And I knew when I was feeling it, there was no need to feel that way… but I still felt like I really didn't properly have cancer the way other people, other women did, because I hadn't had treatment yet. So, I don't go [to the support group] any more, but I do feel that it's something where, if I started treatment, I would go back to again.’
Participant 1
Participant 4 recalled attending a patient-led seminar on CLL and not feeling it was for him:
‘But I did find that this was very much of interest to people that were going through treatment. I did feel that this really wasn't, it was not quite helpful, but it was more appropriate and of interest to those people [on treatment].’
Participant 4
Discussion
The findings reveal participants' initial shock, worry about an uncertain future, unmet need for information and feelings of being an imposter.
The experience of a random diagnosis of CLL following a routine check-up and feeling like an imposter is reported elsewhere (Evans, 2012; Howell et al, 2022). Evans et al (2012) reported that people on watch and wait felt ‘not ill, but ill’, knowing that they had CLL but, in comparison with others with cancer, they were not ill. These feelings and worry were shown in descriptions of anxiety in this group and concur with findings within the current study.
Patients with CLL on watch and wait feel ‘neglected and anxious’ (Davenport, 2021). The findings of the present study also reveal that these patients feel different from cancer patients on treatment and keep their diagnosis private. The need to not ‘publicise it [when treatment had not started]’ impacts whether they decide to disclose their diagnosis to people beyond immediate family (Howell et al, 2022). In terms of being a cancer patient and a cancer survivor, CLL patients on watch and wait are essentially ‘inbetweeners’ (people who fall between different groups), experiencing illness uncertainty and being unable to define the meaning of their illness-related events (Mishel, 1997). In addition, people with cancer often express feeling imposter syndrome associated with the use of the term ‘survivor’ at the time of their diagnosis (Park et al, 2018).
Others have confirmed that uncertainty is a common experience for cancer patients on a watch and wait protocol (Kim et al, 2018; Damen et al, 2022), with patients on watch and wait reporting more anxiety for the future than those being treated (Ardeshna et al, 2014). The possibility of needing active treatment was highlighted by most participants in the current study and four had researched novel therapies, even though only one had been informed that he may need treatment in the near future.
Patient selection is a key aspect of research efforts to determine the benefits of early treatment in CLL and earlier initiation of treatment using novel therapies for those in watch and wait with high-risk CLL (Muchtar et al, 2021). This finding illuminates the need for detailed discussions on watch and wait as a treatment choice to minimise anxiety and worry. People living with a diagnosis of CLL value being involved in treatment-related decision-making (McCaughan et al, 2022).
Information provision
The dissatisfaction with information revealed in the present study was also reported in a recent UK survey undertaken by a patient advocacy group, where the views of 1152 people with CLL were sought, including 243 respondents on watch and wait (Pemberton-Whiteley and Martin, 2019). Of those on watch and wait, only 60% fully understood the reasons for this approach, and only 66% had been given written information on watch and wait. Of those who received information on watch and wait, 15% found it difficult to understand. Patients who were given no information were three times more likely to feel worried than those who did receive information (Pemberton-Whiteley and Martin, 2019).
This finding is supported by a recent study from the Netherlands where 122 adult patients with indolent haematological malignancy on watch and wait, 80 (66%) of whom had CLL, completed questionnaires measuring their anxiety, depression, distress, coping and quality of life (Damen et al, 2022). Unmet needs were reported in 35% (n=43) of patients. The most frequently reported unmet health need among respondents was ‘being informed about things you can do you help yourself get well’ (18%), and the most frequently reported unmet psychological need was ‘uncertainty about the future’ (16%) (Damen et al, 2022).
The authors' finding on participants' dissatisfaction with the information provided on watch and wait at diagnosis may be explained as an approach by some doctors to protect CLL patients on watch and wait from information about symptoms and treatment regimens that they may never experience, as has been previously suggested by Evans et al (2012). Moreover, haematology consultants are often preoccupied with acute care, which makes people on watch and wait feel overlooked (Evans et al, 2012).
Clinical nurse specialists (CNSs) in haematology play a crucial role in educating patients (British Society for Haematology, 2020), and are ideally placed to provide information support to people with CLL on watch and wait. Findings from a UK survey of leukaemia patients (n=2019) reported that when CNSs were involved in education, patients had a greater understanding of their diagnosis and reasons for treatment decisions such as watch and wait (Leukaemia Care, 2016). However, this survey also reported that only 35% of the respondents living with a diagnosis of chronic leukaemia were given access to a haematology CNS (Leukaemia Care, 2016).
There is considerable variation in the employment of haematology CNSs in the UK, with no CNS in some services, and increasing work pressures and high vacancies in nursing roles (British Society for Haematology, 2020). A recent survey of haematology nurses in Ireland (n=78) reported high levels of emotional exhaustion among one-third of the sample and moderate levels of emotional exhaustion among an additional 46% (Gribben and Semple, 2021). Nonetheless, despite these high levels of emotional exhaustion, 64% of nurses reported moderate or high levels of personal accomplishment (Gribben and Semple, 2021).
Management in primary care
An expanding and ageing population of haematology patients surviving longer and the increasing use of new treatments places additional strain on haematology services (British Society for Haematology, 2020).
To manage hospital resources more efficiently, the potential role of primary care in managing people with CLL on watch and wait should be explored. The majority of patients on watch and wait never require an intervention (Nørgaard et al, 2018) and primary care could play a greater role in monitoring this group. However, it is important that patients know they will be referred back to the haematology service if necessary.
For instance, one observational cohort-based study of 246 CLL stage A0 patients in the UK compared the approaches taken by two hospitals (Parry et al, 2015). In one hospital, patients were followed up by the haematology team and, in the second hospital, stage A0 patients were discharged to their primary care team if they had stable blood tests after their second appointment with the haematology team. The results found no differences in patient outcomes between the two groups. It was concluded that there was no impact on patients' outcomes, and it also reduced haematology waiting list times. Moreover, any patients showing signs of disease progression were referred back to the haematology team (Parry et al, 2015).
Providing GPs with details of criteria for referral to haematology for follow-up in addition to a direct phone line to the haematology team for individual guidance is integral to the management of early-stage CLL in primary care (Brieghel et al, 2022).
Video-based information has been shown to be effective in lowering uncertainty among haematology patients having a bone marrow examination (Lee et al, 2021), and could be used to meet the information needs of patients on watch and wait. This could be achieved through haematology centres developing short videos with consultant and specialist nurse input explaining what CLL is, what watch and wait involves, symptoms and risks to be aware of and how to contact the team and support services. This format would familiarise patients with team members who will contact them if telephone clinics continue and also help family members to understand the watch and wait approach. This level of support is not time consuming for the haematology team and would also allow for more time for those acutely unwell while providing additional support to those on watch and wait.
Limitations
This study has a number of limitations. Recruitment was challenging and, over a space of 3 months, only seven eligible participants were recruited via social media.
Although the average age at diagnosis of CLL is 71 years (ASCO, 2017), participants were aged 45-60 years at diagnosis.
Different experiences may have been found had the sample included people who do not use social media. It is reported that people living with a diagnosis of CLL who are proactive in seeking information tend to access information from many social media sites (McCaughan et al, 2022).
Although CLL is more common in men (ASCO, 2017), the sex imbalance in this study's sample raises questions on possible reasons why only one woman was recruited. The men who were interviewed may have viewed the study as an opportunity to share their experiences. It is known that men's social networks decline following a cancer diagnosis whereas women's social networks remain constant and can offer an avenue to share cancer experiences (Park and Kim, 2021). Men and women differ in their psychological reactions to a cancer diagnosis; a cancer diagnosis threatens masculine identity by its associated lack of control over the body and other consequences that challenge masculinity (Pudrovska, 2010). Furthermore, men experience greater and longer mental health consequences following a cancer diagnosis (Park and Kim, 2022).
Conclusion
This qualitative study explored the experiences of people living with a diagnosis of CLL who were on a watch and wait protocol. Study participants described their anxiety and unmet need regarding information. They also revealed feeling like an imposter.
CNSs in haematology are ideally placed to deliver education on watch and wait with information augmented by video-based educational materials developed by the haematology team. Furthermore, a greater understanding is needed of how information provision affects levels of anxiety and worry among people living with CLL on watch and wait. This could be achieved using a prospective randomised controlled feasibility study measuring anxiety and worry comparing pre and post video-based information (experimental group) with no video-based information (control group).
KEY POINTS
- People living with chronic lymphocytic leukaemia who are on watch and wait experience uncertainty and worry
- More information, especially at the time of diagnosis, is required by these patients
- People with chronic lymphocytic leukaemia on watch and wait may feel like an imposter because they do not require treatment
- Videos prepared by the haematology team could meet the informational needs of patients and decrease their anxiety
CPD reflective questions
- Reflect on the patients you have cared for on watch and wait for chronic lymphocytic leukaemia. Did their experiences reflect the descriptions in this study?
- Do you feel the education provided to those on watch and wait in your setting is adequate? Is there anything you would improve?
- In your setting, would video-based educational materials be an approach you would consider?