Transcript Experiences of ICD

Living with an ICD – HF patients’
and partners’/carers’ perspectives
Sinéad McKee
Cardiac Specialist Nurse
18th November 2006
Overview








Sudden cardiac death
Treatment options
Rationale for study
Aims and objectives
Results
Limitations
Learning experience
Conclusion
Sudden cardiac death (SCD)
 Occurs because of arrhythmia – VT or VF
 Mechanisms of SCD complex, not well
understood & vary depending on aetiology
of HF:
 CAD with no previous MI – SCD generally due
to VF induced by ischaemic episode
 Once patients sustain MI & subsequent LVSD,
fibrous scar tissue on myocardium can trigger
‘malignant ventricular arrhythmias’.
Treatment options[1]
 Traditionally arrythmias managed with Amiodarone
 Approx. 25% withdraw from treatment due to side-effects
 Patients who did comply, arrythmia recurrence rates were
30-50% at 5 years
 Amiodarone no better than placebo in SCD-HeFT trial
(Bardy et al 2005); NYHA III patients on Amiodarone –
increased risk of death compared to placebo.
Treatment options[2]
 Recent years more patients receive ICD
 Surgically implanted device consisting of battery
and leads positioned in heart
 Do not prevent occurrence of arrythmias
 Continuously monitors HR and rhythm
 Acts as pacemaker if HR too slow/too fast
(ABP/ATP)
 Cardioverts or defibrillates VT/VF.
Rationale for study[1]
 Following ICD insertion – patients at
reduced risk of SCD
 As a result, an anticipated reduction in
anxiety levels and improved quality of life
may be expected
 Literature is conflicting – possibly due to
methodology used (QoL questionnaires as
part of clinical trials measuring device
efficacy).
Rationale for study[2]
 One study reported improved QoL; others
reported reduction
 Why reduction?
 Fear / anxiety / depression
 Unclear if device related or the fact that patients
know they are at risk of SCD or they know
diagnosis and prognosis
 Very limited information on partners’/carers’
views.
Rationale for study[3]
 Lit search identified 1 previous Australian
study
 3 male patients & partners
 Themes identified:
 First experience of shock
 Lifestyle changes especially driving
 Lack of control
 Anxiety & fear
 Helplessness - family
 No detail of length of time since ICD inserted or
aetiology of HF.
Aims and objectives
Aims
 To ascertain HF patients’ and their
partners’/carers’ perspectives and experiences
of living with an ICD
Objectives
 To identify what psychological issues patients
and their partners/carers have with regard to
living with an ICD
 To identify any concerns patients and their
partners/carers have with physical aspects of
the ICD.
Methodology
 Qualitative approach
 Subjects identified from HFC (CM & FK)
 Inclusion criteria:
 > 18 years with LVSD and ICD, willing to give
consent; partners/carers also invited to participate
 Exclusion criteria:
 Patients with dementia or unwilling to consent
 Patients & partners/carers interviewed using semistructured approach
 Ethical and R&D approval obtained
 Interviews tape-recorded and then transcribed –
challenging/entertaining.
Results[1]
 10 patients and partners/carers agreed to
participate
 9 patients were male; mean age 61 years (range 44
– 75 years)
 7 patients ischaemic aetiology; 3 DCM
 Partners/carers consisted of 1 patient’s mum, rest
were husband/wives of other patients
 Most patients (n=6) had 10 – 12 years of cardiac
problems.
Results[2]
 Time since ICD inserted:
 1 patient had ICD for 4 months
 Others had ICD for 1 – 6 years
 3 patients required replacements
 2 due to battery problems
 1 replaced after 15 months due to faulty device reported
by manufacturer; replaced a second time – reason/time
not clear form interview data.
Results[3]
Reason for ICD insertion
 Primary prevention
 4 patients
 3 patients had non-sustained VT on 24-hour tape
 1 patient had VT during ETT (HGV driver)
 Secondary prevention
 6 patients
 4 patients had VF/VT in association with MI
 2 patients had OoH cardiac arrest.
Results[4]
Understanding of need for ICD
 All participants had good understanding
 Used terms like:




Fast heart rate
Heart going out of rhythm
Fast heart rate that was dangerous
If the heart failed
 1 patient was concerned the doctors may have
misdiagnosed him – newly diagnosed DM;
concerned that it was a hypo he had and not VF.
Results[5]
Understanding of what ICD does[1]
 3 patients and 1 partner aware of pacing
component
 Main focus of all participants was on ability of
ICD to deliver shock if required:
 “Eh well sort of defibrillates if the heart you know goes
out of its rhythm it puts it right and if it is really bad
(laughs) it will give you a shock”
 “You’re always going to get – to word it quite bluntly –
you’re always going to get another chance if it triggers
off, if it works, em depending what’s wrong with you
obviously”.
Results[6]
Understanding of what ICD does[2]
 2 carers suggested ICD fundamental for survival:
 “Quite honestly, I think he would have been dead if he
hadn’t had it in that time”
 “Well actually that’s what is keeping him alive, that and
his tablets. I don’t think I’d have him here if it wasn’t
for the defibrillator”.
Results[7]
Understanding of what ICD does[3]
 1 carer voiced concerns which she previously
never discussed:
 “And then when I got him home (after CABG & ICD) I
started thinking about everything. What, I wasnae
thinking right, (crying) but I thought what if he took
something desperately – like cancer and this
defibrillator kept him alive. Do you know what I mean?
Instead of letting things take their course. Oh dear, the
things that went, oh dear the things that went through
my head. I mean I was in a state I never told (husband)
about the cancer thing”.
Results[8]
Experience of therapy[1]
 1 patient aware of ATP:
 “Sometimes it’s went a wee bit fast but I ken when it’s
sorting something noo cause you go all funny and your
heid and that goes funny and you ken it’s sorting
something. I’ve had that twice, I’ve had it and when I
go to [city Y, centre for check-up], I tell them the day
and the time that that happened and they’ll say, ‘You’re
right, you’re right. You have had a bit of a problem but
it’s, that sorted it’”.
Results[9]
Experience of therapy[2]
 5 patients received shocks; 1 had 3 separate
episodes:
 “Eh the first time was probably the worst, I was eh out
the hospital I think it was 10 days after I got home (post
ICD insertion), and it was just so unexpected. It kicked
off and it lifted me right off my feet. It lasted well over
25 minutes, half an hour. I was still jumping all over the
place by the time the paramedics came to get me”
 “It’s like, the best way to put it, it’s like getting kicked
in the chest by a horse. You get a really hard thump and
there is just no way you can stand still, eh as much as
(laughs) I tried, I thought I tried the first time and just
thought if I sit down but I was bouncing all over the
ground eh you canny stop”.
Results[10]
Experience of therapy[3]
 1 Patient received shock during sex:
 “I know exactly what it felt like. I mean I could’ve
sworn I saw a blue flash. Obviously I didn’t but I
could’ve sworn I saw a blue flash and it was just like eh
I used to mess around with cars when I was younger
and if you touched the high tension lead in the ignition
when the engine is running – well that’s what it was
like”
 Negative impact on sex life.
Results[11]
Experience of therapy[4]
 The analogy of ICD shock being like touching
some part of a car engine was intriguing
 Alluded to by another patient:
 “Well it doesnae bother me (getting a shock) because
I’m a, I’m a mechanic to trade and getting an electric
shock off a spark plug or things like that – I’ve felt it
many times so it doesn’t really affect me as such. All
you feel is bang and that’s it, it’s just a shock. I don’t
eh, it doesnae it doesnae upset me because it eh it’s
only happened twice but it doesnae really bother me
because I’ve felt that type of thing many times before”.
Results[12]
Experience of therapy[5]
 “I had nay idea it was goin to be like what it wus
like (laughs). Oh (big sigh) I got the fright of my
life. I wasnae expecting it, I mean I only got into
my bed, said goodnight and ‘bang’. Oh I was
screaming, actually screaming. Oh I dinnae ken, it
was terrible. I just couldnae, I says, ‘I’ll never, I’m
wanting this oot. I can’t cope with this’ and then
‘bang’ it went again. Three times that night it done
it”.
Results[13]
Experience of therapy[6]
 Phantom firing:
 “I’ve sometimes when you’re in you’re bed you jump, I
mean really jump but they says (cardiac technicians)
it’s nothing to do with that. ‘It’s phantom,’ she says.
People who’ve had it going off – they must be thinking
aboot it. That’s what they telled me anyway cause I
says ‘How do I keep jumping?’ cause that frightened
the life out of me. I mean you dinnae just, you really
jump”
 Husband also discussed ‘phantom firing’ and how it
added further to their anxieties.
Results[14]
Experience of therapy[7]
 3 of the 5 patients were accompanied by carer
when shock delivered
 1 described the experience similar to wife but with
additional anxieties:
 “Eh it fired three times actually in that one night and I
had read in the magazine that it will only fire a
maximum of five times and after five times it gives up
if it eh doesn’t get the normal rhythm back. So that wus
a bit worrying that it had fired three times at once”.
Results[15]
Concerns regarding shock therapy[1]
 2 patients felt safer with device; 2 patients
expressed hope that it would not fire
 P001 received 3 shocks – his main concern was:
 “Probably after having the three shocks now I think the
worst bit of the lot is when it just all stops cause you are
sitting kinda ready waiting for it to kick again and it’s a
long time (laughs), when it seems to go on for a long
time with just, nothing happens. You are always waiting
for the next sort of belt off”.
Results[16]
Concerns regarding shock therapy[2]
 “I don’t worry about the defibrillator. You really
need to try to isolate the two – the heart defect
and the defibrillator. To me the defibrillator is a
necessary evil, it’s a safety belt if you like or a
safety net. I worry sometimes about the state of
the heart that causes the defibrillator to be there
but that’s a different issue altogether”
 “The firing doesn’t bother me, but the reason
why it’s firing does”
 Should have pursued these points/ asked question
in different way to others.
Results[17]
Inappropriate therapy
 4 patients and 4 carers aware it could happen but
were not too concerned
 1 patient reported this happening:


“There were some episodes showing up when they
checked it where they thought that it was maybe
picking up things, the kinda funny heart rhythm that I
have got (atrial fibrillation) was sort of fooling the
machine. That I was needing treatment when I wasnae
actually eh needing to get it done”
Some participants unaware – increased anxieties.
Results[18]
Confidence with device
 Increased confidence reported by patients/carers
 1 patient more laid back but also felt able to push
himself more knowing he had back-up of ICD
Body image
 No issues with scar/altered body image
 May relate to age of participants
Physical discomfort
 Mainly associated with initial surgery
 2 reported pain if accidentally hit ICD
 1 unable to do hobby (target shooting).
Results[19]
Limitations to lifestyle[1]
 ICD no restrictions to lifestyle, but general health
 Issues around driving/sailing highlighted
 Safety conscious at work:

Now I’ve got this defibrillator in and, if it kicks in,
I’m going to get a jolt and fall off the roof. So what
I’ve done, I’ve got a harness, ken the harness just to
be on the safe side. Other than that, I just carry on
with my work”.
Results[20]
Limitations to lifestyle[2]
 Most people who holiday abroad aware of issues
in airport & to have info on nearest hospital.
 2 patients identified problems with sexual
relationship as a result of ICD
 1 patient did not want to go out:

I didnae want to go anywhere cause I was always
feart. ‘I’m no gonnae in case it went off and me
outside’ and I wouldnae go oot. I couldnae handle it if
that went off outside and everybody’d be lookin at me
and everything, ken”.
Results[21]
Check-ups
 All patients attended



Reassured after checks
1 patient reported “feeling wary” prior to check but
reassured after check knowing that everything was ok
All aware of battery


Most didn’t worry about it. 2 patients were concerned
if ICD was pacing a lot – it would deplete quicker
2 patients worried about getting battery replaced –
because they would be in hospital.
Limitations of study
 Patients’ age and sex
 Majority male
 Representative of HFC patients in FVAH
 Half female patients attended researcher’s
clinic and were not included
 Mean age 61 (range 44-75 years)
 Similar to HFC patients in FVAH (mean 62.5)
but range is wider (27-81)
 Suggests age distribution not well represented
 Inexperience of researcher.
Learning experience
 Ethical approval – arduous process despite
meticulous proof-reading
 Qualitative research process
 Interview process – keeping participants
focused on topic
 Transcribing data – local dialect (Munro, M
The Complete Patter)
 Increased knowledge on issues around ICDs
 More confident discussing issues with
patients/partners.
Conclusion
 Similar findings to Australian study:
 Anxiety/fear/unpredictability of shocks
 What shock felt like
 Lifestyle restrictions
 Highlighted additional areas where more info
required:
 Inappropriate firing
 Deactivation of defibrillating component
 Resuming sex life
 Phantom firing
 More research required.