Living with an ICD – HF patients’ and partners’/carers’ perspectives

Sinéad McKeeCardiac 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 semi-structured 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 ICDBody image No issues with scar/altered body image May relate to age of participantsPhysical 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.