Participant demographics are outlined in Table 1. Fifteen participants (10 female, 5 male) participated in this study (age range: 38-74 years). Participants experienced between 1 and 4 CVD risk factors and all were receiving cancer treatment.
Table 1
Patient identification number
|
Gender
|
Country of birth
|
Age
|
Highest level of education
|
Cancer
Diagnosis
|
CVD
Diagnosis
|
Number clinic visits
|
1
|
M
|
Australia
|
65
|
Lower secondary
|
Metastatic lung
|
Chronic AF
HT
Dyslipidemia
|
5
|
2
|
M
|
Australia
|
73
|
Lower secondary
|
Metastatic
Melanoma
|
MVR & Atrial septal defect repair 2019
Heart Failure
|
9
|
3
|
F
|
Australia
|
61
|
Bachelor degree
|
Breast
|
HT
Morbid obesity
|
10
|
4
|
F
|
Australia
|
47
|
High School Certificate
|
Breast
|
LVEF drop
|
6
|
5
|
M
|
Australia
|
57
|
Certificate
|
Melanoma
metastatic
|
ACS
HT
LVH due to HT
|
4
|
6
|
F
|
Australia
|
49
|
Certificate
|
Metastatic breast
|
HT
Left ventricular systolic dysfunction
|
2
|
7
|
F
|
Australia
|
64
|
Upper secondary
|
Sigmoid
Metastatic breast
|
Minor CAD
|
2
|
8
|
M
|
United Kingdom
|
62
|
PhD
|
AL Amyloidosis
|
LVH
|
4
|
9
|
F
|
Australia
|
64
|
Bachelor degree
|
Breast
|
PHT
PAF
|
5
|
10
|
F
|
New Zealand
|
43
|
Upper secondary
|
Breast
|
Ex smoker
Overweight
PCOS
|
2
|
11
|
F
|
Australia
|
38
|
Bachelor degree
|
Breast
|
Ex-smoker
|
2
|
12
|
F
|
Australia
|
63
|
Lower secondary
|
Follicular NHL
|
HFrEF
|
8
|
13
|
M
|
Australia
|
74
|
Bachelor degree
|
Metastatic clear cell, renal cell
|
MVR
DCM
AF
|
13
|
14
|
F
|
Australia
|
59
|
Certificate
|
Breast
|
HT
Dyslipidemia
NSTEMI
|
7
|
15
|
F
|
Australia
|
62
|
Yr 10
|
Breast
|
Dyslipidemia
Osteoarthritis
|
6
|
AF – Atrial Fibrillation; CAD - Coronary artery disease; CVD – cardio-vascular disease; DCM- Dilated cardiomyopathy; HFrEF - Heart failure with preserved ejection fraction HT – Hypertension; LVEF Left ventricular ejection fraction; LVH - Left ventricular hypertrophy; MVR- Mitral Valve Regurgitation; NSTEMI - Non-ST-Elevation Myocardial Infarction; PAF - Paroxysmal atrial fibrillation; PCOS - Polycystic ovary syndrome; PAF - Paroxysmal atrial fibrillation; PHT- Pulmonary hypertension |
The following key themes were identified:
1. Access to a cardio-oncology clinic promotes information and understanding
2. The experience of early CVD intervention
3. Factors promoting integrated care
4. Balancing cancer and CVD symptoms
5. Managing past and emerging CVD risk factors
Access to a cardio-oncology clinic promotes information and understanding
Most participants reported they were unaware of the association between CVD and cancer treatment. Even at the time of diagnosis and treatment planning participant reflections suggested there were variances in understanding. More often women with breast cancer, who were being treated with Herceptin, reported they had been informed of CVD risk and this awareness was reinforced by regular ECG monitoring.
It [the risk of CVD] was [explained to me], but it was not emphasised. Yeah, I knew that there was some chance that I might develop some heart failure or some sort of cardiac irritation. (P9)
I was on the Herceptin and they knew that the Herceptin could mix with your heart. (P4)
Despite initial feelings of shock and anxiety when considering the risk of developing CVD alongside cancer, on reflection, many participants appreciated that cancer treatment could cause harm.
The logic inside my brain went ,”Yeah, I guess that’s right”, you know. I guess it makes sense.… it [CVD] could happen. (P13)
I wasn’t aware that there was a likely or a possible side effect, but then there are so many other side effects, so it makes sense. (P15)
Most participants reported they were referred to the cardio oncology clinic at an early stage in their cancer treatment, due to the experience of existing CVD, or in response to emergent CVD symptoms. All participants expressed that early referral to the cardio oncology clinic provided a sense of relief and comfort rather than exemplifying any health concerns. There was a consensus across participants towards feelings of gratefulness and being “reassured” (P8) at close monitoring, such that if anything was detected, it could be treated early.
I sort of feel like a relief actually…. because I am being treated for cancer but I got these really good people looking after my heart as well. If something is going to happen there is a good chance that they can catch it - so that is a comforting thing really, more than confronting. (P50)
Participants were also grateful for close monitoring as their reports suggested they weren’t confident in their own ability to detect symptoms of CVD. As it was, several participants attributed emerging CVD symptoms to be side effects from chemotherapy.
But if I hadn’t been there [at the clinic], I don’t whether I would have noticed heart symptoms or when it would have been picked up or any of that sort of stuff. (P3)
But I never really noticed. I was not as active as what I usually was and I was tired, lethargic, I was sleeping a lot. I just generally felt quiet but I thought that I was feeling that way because of the chemo, not because of the heart. (P4)
The experience of early CVD intervention
The majority of participants with a new diagnosis of CVD, reportedly felt confronted or “panicked” (P7) by the detection of CVD through altered blood results or imaging
It was scary….It is confronting, it is, and I know that heart disease takes a lot of people who have had chemo and cancer treatments. (P3)
Once enrolled in the cardio-oncology clinic, participants were notified of any CVD changes at an early stage . For example, one participant was notified of a raise in troponin by her General Practitioner (GP) and then promptly received a phone call from the cardio-oncology clinic to discuss treatment implications.
They did l regular bloods and I got a phone call off my GP... I was like [shocked] but then I had a phone call from the cardio-oncology clinic and the cardiologist. (P11).
Following CVD changes all participants appreciated regular monitoring and ongoing management of CVD symptoms. Further, the responsiveness of the cardio oncology clinic and recommendations provided made them feel cared for. Being treated with a calming and reassuring manner helped to reduce any apprehension about their health.
It was great, well, [the cardiologist] is such a comforting and calming person. It was nice just to know that there was some support behind it, just to keep an eye on things and make sure I’m OK…and let me know what was happening. If there was a problem then we could start to deal with that as well. (P3)
The quality of clinicians’ explanations was perceived as a key factor in promoting confidence and trust in the treatment proposed.
I was quite worried, yeah. Didn’t really know what it [CVD changes] meant, but they were wonderful and [the cardiologist] explained it to me. (P7)
Quality of communication was closely linked with frequency of communication and available access to clinicians for information when needed.
I think just keeping me in regular contact and listening to what the expert is talking about. You have got to put your trust in them that they are doing the right thing. (P14)
I think they managed to check in with me with enough frequency to reassure me that my heart was doing okay. I have had some positive signs but knowing it [the clinic] was there was reassuring. But it was not invasive like I was not getting panicked because I was getting too many messages. So, everything sort of felt like they were just routine checks and that was reassuring. (P8)
This was particularly the case when participants, experiencing emerging or exacerbated CVD, received early intervention that promoted continuation of cancer treatment.
So, once my heart function gets below 45, my treatment has to stop and I have to wait for my heart function to go back up again. But [the cardiologist], has helped a lot, because he puts me on the medication to bring it up or whatever….. So, I can continue treatment. Happy days. (P6)
I developed Cardiomyopathy. I have 46% heart function at the moment, so it’s dropped. The chemotherapy has knocked it around a bit, but [the cardiologist] has got me on medication and monitoring me every three months or so. So far, everything is going okay. (P3)
Factors promoting integrated care
All participants appreciated the collaboration and shared understanding they observed between their treating specialists, especially their oncologist and cardiologist. In response, participants felt that any specific questions they had could be better targeted by the specialists with the most expertise.
It has been really good because they all know what the other one is thinking and doing for me. I think it has been really encouraging. (P14)
I feel comfortable. [The cardiologist] has been an assurance that …. neither [specialist] was sort of guessing something out of their field. They are both excellent, you know. On occasions the oncologist might say in discussion, “Oh that’s [the cardiologist problem]” or [the cardiologist] will say, “Go talk to [the oncologist about that].”….I talk to both of them. (P13)
Indeed, one participant expressed that knowing their specialists were in collaboration meant they didn’t have to keep repeating things.
Yeah, great, they know things before I even have to say something. They are on top of it, which is really good. It makes me feel good because I don’t have to sort of keep repeating myself over and over. (P6)
Participants also reported that collaboration between specialists made them feel like they were being treated as people rather than patients, since they felt they were an integral component of treatment decision making.
They sort of did not make me feel like they were taking care of me as a pathetic little piece of meat, that needed to be turned back into a human. They sort of gave me this feeling that they were part of the journey, they were sort of coming along and supporting me. It sounds pretty cliché but it seemed really real to me. (P8)
I was really happy that [the cardiologist] gave me that option [of starting medication or not]. I felt really empowered. It wasn’t just like, you are a patient and I am saying this is what we should do…he did assure me that even though there is a marker of damage, he has seen a lot higher and he still gave me the option. (P11)
Overall, participants felt comforted that everything that could be done was being done.
It is comforting to know that we have doctors and specialists that do not give up you know. They are not just going to say, “Sorry you are not a candidate anymore for treatment” - they can manage it for as long as they kind of want to, so it is kind of comforting. (P11)
Balancing cancer and CVD symptoms
Participants readily expressed the challenges of dealing with the treatment demands between two chronic diseases, namely cancer and CVD. Many reported that discerning which disease took precedence was a daily battle depending their symptom presentation.
Having two [disease] can be daunting ... I mean the last thing you think of before you go to sleep is like, “Let’s hope I wake up tomorrow”. Or, “I wonder how the cancer is going to be tomorrow?” or you know, “How will my heart be?”. (P1)
I can’t isolate them [what disease is most pressing] any way. I just try and look after each of those conditions, yeah. (P13)
Many participants indicated that responding to treatment and was a balancing act that depended on presenting symptoms and which treatments could be maintained. For most part, overcoming cancer was the priority.
I don’t know, it’s really hard to find that balance, because if my heart function drops then I miss out on treatment…. it is sort of scary to not have your treatment. It’s just that, it is a double-edged sword, because my cancer is sort of stable, but my heart isn’t, so, you just can’t win. It would be good if it all just came together and you know, if it is not one thing it’s another, but yeah, finding a balance… I haven’t found it yet. It’s really really hard. But they keep you stable, that is fantastic. (P6)
It's just a balancing act ….I honestly couldn’t tell you who would take precedence. (P3)
Many participants reported that balancing the medical demands of two conditions was overwhelming, especially due to the frequency of appointments
I can show you my diary, it’s just full and I have to keep this diary and I write stuff up on the white board as well. It just blows my mind the amount of appointments I have got. So, I often feel a bit overwhelmed. (P7)
I need to book things in, juggle everything – brain scan, PET scans. It is hard dealing with everything at once. (P2)
Most participants expressed comfort and relief in knowing that treatment of the CVD meant their heart was stabilise so that they could continue active cancer treatment.
Oh, absolutely it has been hard. As I said [cardiologist] is doing a great job with my heart. So, thank God that is not a problem and it is not constantly a problem. Because he has done a great job, it is giving me time to take my mind off the heart. I know it is still there and it will never go. The oncologist currently drives everything because the heart has been sort of stable and has not been changing. (P5)
But I don’t really feel anything [CVD symptoms] , the tablets seem to be doing the job [the cardiologist]. I am really pleased … because then I can concentrate on the cancer. I think it is more important being positive with the cancer than your heart. The heart is okay, I know it is important but it’s not hurting as much as what the cancer is so. (P1)
Managing past and emerging CVD risk factors
Participants reflected on risk factors that were diagnosed both before and after their cancer diagnosis.
I was stressed all the time and they told me that stress would have had a lot to do with my cancer. (P1)
I am aware of my weight gain and the normal lifestyle ones I suppose that anyone gets at my age. But I have had no high blood pressure or anything like that. (P3)
Making actives effort to address CVD risk factors following cancer diagnosis was experienced on a spectrum whereby some participants made deliberate attempts and others were less likely to.
Yeah, I have cut back alcohol. I was a moderate drinker – I probably had a bottle of wine on Friday, Saturday and Sunday and now I do not. I still have drink but I do not drink during the week. I am eating really clean and healthy that is a big thing for me. (P4)
For many participants the side effects of their cancer treatment, especially fatigue, left them with little energy to address risk factors.
I do not exercise enough, I know that, but when you are exhausted all the time. It is hard to do that, yeah. I cannot say that I prioritised one over the other. It was a bit of a blow to get the extra diagnosis, but it was what it was, there was nothing you could do about it. Just suck it in and soldier on, you know. (P15)
I feel really fatigued, I am still coughing a bit. I actually do not think I am at the level where I feel that I can start recovering. I am still way below that level yet, but my sense of humour is starting to return. (P8)
Previously active participants expressed feelings of frustration when cancer side effects got in the way. In general, they tried to keep active with valued activities such as walking and house renovations.
I used to be on the go, sort of bushwalking and go upstairs and things like that without puffing. This is ridiculous…I will just try to my breath again and just continue. I know my friends and family wouldn’t care, they would hang back and wait for me. It bothers me more than anyone else. (P6)
I feel in myself that I am slowing up, that’s quite noticeable with the amount of work I can do, yeah. I suppose that’s normal, with not doing as much, I can feel my strength weakening. When I do go to do something, it takes longer or I need assistance to do it. (P13)
Following their cancer diagnosis, participants reported varying experiences about receiving education towards managing CVD risk factors. A few participants reported the value of participation in an Information Day for newly diagnosed cancer patients prior to commencing chemotherapy.
I went down for an information day so that [managing risk factors] was highlighted then. (P4)
However, some patients fell through the gap towards with receiving details of the Information Day , such as during admission to hospital.
Before you start chemo, they give you an information session the day before. Well because I was an inpatient, I did not get that. (P15)
Overall, the majority of participants reported they had received little of no education towards risk modification of CVD symptoms by their treating clinicians, except for one participant who was a smoker. However, despite being told not to smoke she reported she “wasn’t referred for professional support.” (P15)
No-one has really talked to me about risk factor modification. (P6)
One of the doctors said early on how important it is to stay active. She said [its important] to keep moving because the chemo goes in, it does what it needs to do and then you have to make it leave the body….. cardio or weight lifting, just gentle exercise, moving, gentle swimming if you can do that. I think it is very important to keep doing that, I walk the dogs most days. (P11)
Several participants were encouraged to exercise by the colleagues and friends, mostly as a way to promote better cancer outcomes. For these participants the accountability of friends was reported to be strong motivator for maintaining exercise during and after treatment.
The best bit of advice that was given to me was by one of my colleagues, a physiotherapist, who said, “The research suggests that physical activity contributes to good cancer outcomes.” So, I continued to walk a lot and get out of the house, and every day my mantra was get out, get dressed, put your lipstick on, get out of the house, and rain, hail or shine, maybe not hail, I would walk. Depending on what’s happening with my shortness of breath and ankle oedema, I had to cut out the hills, but I always walked. (P9)
I ran into one of the girls I used to go to the gym with. She knew what was going on and she said, “When are you coming back, come on come back”. Then the trainer texted me and said, “Do you want to come back and are you ready for this?” I said, “Yes.” I haven’t missed a day. (P4)
Weight management concerns were commonly-expressed by participants as a mechanism to reduce their CVD, however some participants indicated they were focusing on recovery and would address CVD down the track.
I am 100 kilos, I already know that that puts pressure on my body and the treatment from cancer has limited my physical activity. I just need to work through one thing at a time and just work on that to better myself. (P10)
For others the diagnosis of cancer provided a reason to reflect on lifestyle and make changes
Yeah and when I used to work, I’d work late at night and so sometimes I didn’t come home till 11 at night. I hadn’t had diner so I’d stop by and I pick up Maccas (McDonalds) or I’d come home and have vegemite on toast with lots of butter. I was just in that rut. That is why now with my work I don’t want to go out and do any of that anymore. This is my time to get myself back. So, I am eating really well, exercising. (P4)
Cancer afforded me the opportunity to get off the treadmill and step away from doing somethings. Perhaps it was time to… re-evaluate…(P9)