Data saturation was reached at thirty interviews with seventeen patients and thirteen HCPs. Patients broadly represented the HMRN CML population in terms of sex (8 females, 9 males), age at diagnosis (median 55 years) and hospital attended (53% local hospital, 47% cancer centre: Table 1). HCPs represented HMRN hospital type, however were intentionally weighted towards CML or myeloid practitioners; 38% worked in cancer centres and 62% had at least ten years’ experience (Table 2).
Table 1
Patients characteristics
Study ID
|
Hospital
|
Age at diagnosis
|
Gender
|
Year of diagnosis
|
PA02*
|
CC1
|
61-70
|
M
|
2005-2010
|
PA04
|
LH2
|
61-70
|
F
|
2005-2010
|
PA06
|
CC
|
51-60
|
F
|
2005-2010
|
PA07
|
LH
|
51-60
|
M
|
2011-2015
|
PA11
|
CC
|
61-70
|
M
|
2016+
|
PA15
|
LH
|
51-60
|
M
|
2011-2015
|
PA19
|
LH
|
61-70
|
M
|
2016+
|
PA20
|
LH
|
51-60
|
F
|
2016+
|
PA21
|
LH
|
51-60
|
F
|
2011-2015
|
PA24
|
CC
|
≤50
|
M
|
2005-2010
|
PA25
|
CC
|
51-60
|
F
|
2011-2015
|
PA26
|
CC
|
61-70
|
F
|
Pre-2004
|
PA27
|
CC
|
Not known
|
M
|
Pre-2004
|
PA28
|
LH
|
71-80
|
M
|
2011-2015
|
PA29
|
LH
|
Not known
|
F
|
Pre-2004
|
PA30
|
LH
|
≤50
|
F
|
2005-2010
|
PA32
|
LH
|
≤50
|
M
|
2011-2015
|
*Missing IDs represent invited patients who did not participate; 1CC - Cancer centre; 2LH - Local hospital.
Table 2
Health Care Practitioners occupational details
Study ID
|
Role
|
Years in role
|
Hospital type
|
Specialism
|
Clinic type
|
PR01*
|
CNS³
|
10 years +
|
CC1
|
Myeloid +/- CML
|
Specialist CML
|
PR02
|
Consultant
|
10 years +
|
CC
|
Myeloid +/- CML
|
Specialist CML
|
PR03
|
CNS
|
10 years +
|
CC
|
Myeloid +/- CML
|
Specialist CML
|
PR04
|
CNS
|
10 years +
|
LH2
|
Myeloid +/- CML
|
General haematology
|
PR05
|
CNS
|
10 years +
|
LH
|
Myeloid +/- CML
|
Specialist/general haematology
|
PR06
|
Consultant
|
10 years +
|
LH
|
Generalist
|
General haematology
|
PR08
|
CNS
|
1-5 years
|
LH
|
Myeloid +/- CML
|
Specialist CML
|
PR10
|
Consultant
|
10 years +
|
LH
|
Myeloid +/- CML
|
General haematology
|
PR11
|
Consultant
|
1-5 years
|
LH
|
Myeloid +/- CML
|
General haematology
|
PR14
|
CNS
|
10 years +
|
CC
|
Myeloid +/- CML
|
Specialist CML
|
PR15
|
Consultant
|
1-5 years
|
LH
|
Generalist
|
General haematology
|
PR19
|
CNS
|
10 years +
|
LH
|
Generalist
|
General haematology
|
PR20
|
Consultant
|
1-5 years
|
CC
|
Myeloid +/- CML
|
Specialist CML
|
*Missing IDs represent invited HCPs who did not participate 1CC - Cancer centre; 2LH - Local hospital, ³CNS - Clinical Nurse Specialist
Analytical themes
Rich descriptions from patients facilitated the generation of two themes: “Significant impact of disease and treatment” and “Mediators of the impact of disease and treatment”, each with multiple sub-themes (Figure 1). Findings are based on patient accounts, with further insights provided from within the HCP data. Quotations are attributed to individuals: PA=patients; PR=HCPs.
Theme 1: Significant impact of disease and treatment
Sub-theme a: Widespread side-effects
Most patients described wide-ranging side-effects, most commonly gastrointestinal complications, fatigue, and muscular pain and cramps, which they attributed to taking TKIs; but also respiratory, skin and hair, and cardiovascular effects; and less frequently, prolonged infections, dizziness, tinnitus, allergy, mood change and blurred vision:
“It’s once a day and I have it at breakfast time and I sandwich it within my breakfast. I can be sick after it if I don’t…if I just take the tablet I would definitely be sick, it really irritates my stomach.” (PA04)
“I go to the gym a couple of, 3 times a week depending on how tired I feel afterwards. I’m not so bad when I’m there. I feel as though I’ve got the energy to do it but it’s the aftermath. It’s the next day, I’m really fatigued.” (PA21)
“When I get the cramps in my legs and my arms…that can be bad.” (PA15)
Several patients discussed living with side-effects alongside symptoms from co-morbidities, which could be hard to distinguish, and according to several HCPs may augment difficulties. Co-morbidities could also limit treatment choices or require TKI modification:
“I have other medical problems, which you don’t know whether it’s the leukaemia or the diabetes or anything else what’s going off.” (PA19)
Several HCPs reported that TKIs were usually well tolerated, but many discussed side-effects, which reflected some of the problems patients commonly reported:
“The biggest thing these guys complain of is tiredness and tiredness is a nightmare, you’ve just had a bad nights’ sleep but it’s more than that in these guys.” (PR20)
Only one HCP referred to muscle pain/cramps and there were no reports of respiratory issues, although these are both known side effects to TKIs.
Sub-theme b: Impact on daily life
Daily life was impacted in many ways, at diagnosis and over time, with the most frequently reported effects being psychological, patients describing changes to their mood; some saying they felt “upset”, “less positive” and like they were “losing control”:
“It’s putting me down. I used to be more positive, really, really positive but yet I’m more down.” (PA29)
Several patients still worked, and just under half of these described needing to reduce or stop this due to fatigue, shortness of breath and feeling generally unwell. While some expressed being “less stressed” and more “in control” as a result, others found change difficult to instigate, as they were reluctant to disclose symptoms or pessimistic about finding and sustaining suitable hours or roles:
“I had a battle working in the NHS… it was within my first year, I had a battle with my employer [laughs]. I only worked part-time…20 hours, but that was a struggle because I did it over 4 days. Now with the fatigue I couldn’t, you know.” (PA25)
Several HCPs corroborated patient accounts regarding fatigue, although others believed a normal working life should be possible:
“Most [patients] hold down jobs and whatever and are fine.” (PR05)
Some patients indicated physical or mobility issues due to generally “slowing down”, which impacted activities such as attending hospital appointments. Patients also referred to many other activities they felt were affected by their CML, including holidays and travel, sport, socialising, dining out and household jobs:
“…it’s a bit awkward if you’re going out for a meal with other people because I’ve got to sort of eat round about 8 o’clock…you know that you can’t eat anything 2 hours before and 2 hours after [taking medication].” (PA07)
Daily life could also be affected by co-morbidities, which could have more impact than the CML itself:
“My stroke limits me more than my leukaemia. I can cope with that easily.” (PA26)
HCPs reported that travel insurance caused particular difficulties, but their reports did not reflect the number and range of other impacts on daily life described by patients.
Sub-theme c: Changed perspective on life
Most patients noted how CML had changed their perspective on life, reporting mixed emotions, frequently beginning with shock at an often unexpected diagnosis. Many HCPs mirrored these accounts, acknowledging the diagnosis as a “challenge”, a “burden”, and “life-changing”, with such feelings often enhanced in younger people:
“Certainly, to begin with, you’re going to be, you have a chronic illness and you’re going to be taking the drugs for a long period of time is a real burden for some…particularly younger people who didn’t see this coming.” (PR02)
Following diagnosis, most patients described accepting their cancer and returning to usual activities. Rather than passive, this seemed an active process, occurring after learning more about CML and its prognosis, and evidence of a positive response to TKIs, and for some, overriding concerns about co-morbidities:
“I got introduced to the nurses and they gave me some information and I started reading up on it and I’m thinking, oh it’s not as bad as what – it’s probably one of the best cancers to get if you’re going to get it. So I was positive then and thinking right I can cope with this.” (PA15)
Several patients felt their positive personality and will to keep active enabled them to accept and cope with their diagnosis. Some expressed a renewed appreciation for life, and felt lucky, or grateful for their treatment:
“But we just live for us [sic] holidays now, and it’s made me appreciate life a lot more, you know.” (PA07)
Conversely, despite presenting a positive perspective, several of the same patients also expressed negative emotions, including fear of cancer progression and general health anxiety:
“I do get a little bit worked up before I go [to hospital], I think because I forget about it the rest of the time and it’s always just on your mind that it could, you know, it might not be as good as it was last time.” (PA20)
When asked what advice they would give a friend receiving the same diagnosis, patients said they would urge them not to worry and to keep active, however, phrases such as: “don’t give up” (PA28), “don’t let it get you down” (PA15) and “accept what your life is now…you have to” (PA25) suggests they struggled to maintain this positivity.
HCPs showed some agreement, believing many patients had a positive attitude to living with CML, which some felt could support medication adherence and coping:
“[TKIs have] transformed their life…It’s enabled them to live really. Yeah they feel quite positive about things.” (PR03)
Whilst many HCPs noted the psychological impact of CML diagnosis, there was little description of the active process and struggle patients described to accept their diagnosis and remain positive. This may be because HCPs compared CML to the more acute subtypes, receiving intensive chemotherapy within their wider caseload:
“When you compare it with acute myeloid leukaemias or dysplastic syndrome then obviously CML patients have much more, better prognosis, it’s basically now chronic benign condition…” (PR11)
Such underestimation of the impact of CML could also be due to insufficient clinic time for exploratory discussions with patients:
“If you have a busy clinic with lots of patients, lots of them take longer than 15 minutes, other diseases which are more complex have more complex chemotherapy…If you then have a stable CML patient in between…it’s not uncommon to then kind of use this to make up time.” (PR10)
Theme 2: Mediators of the impact of disease and treatment
Sub-theme a: Knowledge and awareness
Patient knowledge and awareness varied between and within individuals, and over time. Even where knowledge existed, for example around disease response, patients understood this in different ways; some referring to specific terms, such as “BCR-ABL level”, “MMR” and “log-reduction”, whilst others based this on blood results or talked about their results graph:
“…the last time I went…I’d just got into the green [on graph] so that’s what they were aiming for.” (PA07)
Poor understanding of side-effects was evident in some patients, who were unsure whether their symptoms were caused by the TKI, or who believed they had received insufficient information:
“Never had the energy and to be fair, I’ve never really spoke to anybody else who has the same symptoms or (is) on the same medication to find out what other effects people have. So I wouldn’t know whether it’s part of it or what really.” (PA24)
This contrasts with HCP accounts, several of which report providing advice about side-effects at diagnosis, and supportive discussions:
“I think in trying to encourage people to stay on therapy who do have side-effects it’s trying to help them see the positives and the reasoning behind it all and why the side-effects are happening…knowledge is helpful isn’t it?” (PR02)
Major misunderstandings were infrequent, although concerning:
“They say Pennsylvania strain what I’ve got, which I don’t know what that is…I suppose it’s one type of leukaemia…if I’ve got this faulty gene, will it be passed down in any way?” (PA28)
Several HCPs reported information needs declining over time, alongside a growing preference for psychosocial support, with some accepting that anxiety may be an ongoing struggle:
“There’s always the anxiety every time they come to clinic about their blood results.” (PR4)
Sub-theme b: Social Support
All patients talked about the role of family, friends, employers and others in providing social support, which was considered important. This included help with daily tasks, having someone to share emotions, and advocacy:
“There was [Haematologist] and [CNS]…they were just lovely, they went through everything. There was [sic] obviously some bits I hadn’t taken in but [son] obviously had and [son] asked more questions than me.” (PA20)
Patients used words such as “close”, “looking after”, “coping” and “keeping in touch” when referring to their support network, suggesting their appreciation for the “personal” aspects of care. However, such support could become complex; for example post-bereavement or among patients who had caring responsibilities themselves, highlighting the lifelong nature of CML, lived within a dynamic context:
“…my daughter, he’s her third (child) and…she had to be hospitalised twice. So grandma had to step in and take over.” (PA25)
Few HCPs discussed the role of family and friends, despite several considering the impact of patients’ social contexts on their experience, such as the relationship between socioeconomic status and co-morbidity.
Sub-theme c: Hospital care
Aspects of hospital care, described in the context of the HCP’s role and healthcare quality, could be beneficial (reassurance and explanations); or negative (missing results that delayed treatment decisions). Patients largely described their overall care positively, although were more ambivalent about specific aspects of it. Many spoke positively about the nature of hospital staff and several described good, trusting relationships, including the ability to talk about their feelings, which instilled reassurance, particularly at diagnosis:
“There’s not much [HCP] doesn’t know…and if you have any worries you can get in touch and she puts it right…she’s very good. You can’t ask for anything else.” (PA11)
“We do encourage [patients] to lead as normal life as possible.” (PR04)
Almost a third of HCPs likened CML to chronic illness, compared to two patients:
“I tell patients, this is like hypertension now, we can control it very well and if we control it well, there’s nothing much to worry about.” (PR15)
Several patients said they had appreciated receiving clear information from HCPs. However, whilst some were satisfied with explanations about side-effects, others perceived HCPs as too busy or disinterested to note their symptoms; they were also worried how HCPs may react:
“…she’s always busy and that, and you sort of feel, you get to the point and I got to the point when you think I’ve had [CML] that long [HCPs] really don’t want to know.” (PA29)
When discussing hospital systems, several patients highlighted efficiency, particularly regarding the diagnostic process, receipt of test results, and clinic functioning:
“…they sent me straightaway to the hospital. I was dealt with amazingly, the treatment I had was absolutely superb. Within the week I was diagnosed and then it went from there.” (PA04)
Some HCPs offered more detail about measures to ensure clinic efficiency, such as arranging prior blood tests and informing pharmacy of medication requirements, and many emphasised the quality of the regional specialist laboratory.
“HMDS [regional specialist laboratory] who produce a nice integrated report with a graphical picture for me to say, this is where their BCR-ABL ratio is compared with previously and actually showing that to patients is really, really useful.” (PR20)
A number of patients were managed via nurse-led telephone clinics, and while one patient felt it easier to express himself face-to face, most preferred this remote contact, as lengthy waiting times were avoided:
“You know, you’re sitting there for maybe an hour and a half and it’s boring. It’s nice when you go in to see the doctor but I’m fed up by then.” (PA26)
A medication home delivery service was sometimes available and seen positively by clinical staff, and some patients.
Conversely, some patients found clinics to be inefficient and delayed, with lost results and letters. Several found hospital parking expensive, unpredictable or busy, with one patient attending alone as her husband was unable to park (PA29). Many reported pharmacy issues, meaning medication could run out early and extra trips to hospital were required. Such difficulties were reported less frequently by HCPs:
“Most of the time they don’t have enough (medication)…and, half the time they end up owing you some so you have to go back.” (PA21)