A-Z

Clinical Trials

Feelings when a trial ends

Sometimes trials involved only a one-off or fairly short commitment from patients, and for these people the end of their involvement was not much of an issue. However, in other trials people were involved for a longer time, and the trial became quite a part of their lives. The point at which the trial ended, or the individual stopped being involved, led to a mixture of feelings. This often depended partly on the kind of relationship between the research team and the patient.

 

The end of a trial feels to him like a ‘non-event’ – he has little rapport with the researchers...

The end of a trial feels to him like a ‘non-event’ – he has little rapport with the researchers...

Age at interview: 64
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
What’s it like when it finishes? Does it feel strange when you’re no longer going and being looked after by the specialist clinic or?
 
Not really, though. Well, it’s like a non-event. You just go along. In most cases you’re with the researcher on an individual basis. It’s not something with a group of you become friends and look forward to meeting together with the researcher, he’s interested in research, and it’s, “Bye”. And later on even if you try to contact him, he’s not interested, it’s just like a non-event. It’s just like going to the GP and then coming off.
 

Elvan missed the trial when it ended. He liked the research team and was disappointed they hadn’t...

Elvan missed the trial when it ended. He liked the research team and was disappointed they hadn’t...

Age at interview: 84
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
When the trial ended, how did that feel when, when you weren’t going up to the hospital any more and were back to your GP? Was that okay? Or did you miss going to the hospital?
 
I missed going there, I missed going there.
 
Why was that?
 
Because I thought eventually they would, they would have more success. So I missed going there. I don’t mind taking the time go there.
 
So it’s kind of disappointing really that, that you haven’t improved more?
 
Yes, yes, yes, I’m disappointed. I’m disappointed, yes.
 
What were the things you particularly liked about the way that you were cared for there?
 
Yes, I think I was cared for all right. I think I was cared for all right, yeah.
 
Were there particular things, I mean was it they way that they talked to you or, what made it so good, going to the hospital?
 
I, as I say, I had a good rapport with them, you see. And so, you know, it was all quite nice. As a matter of fact, I really looked forward to going there, just to see them and just to have a laugh, talk and have a laugh with them, yes.
 

Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he...

Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he...

Age at interview: 58
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
What did it feel like at that point when suddenly it stops?
 
[Laughs] Well, I don’t know. A bit sad, I suppose, in a way. It’s like a, because you almost become friends with people, you know. You’ve known, it’s the same sort of, more or less the same team over the last five or six years. And, yeah, I was, I was quite happy. I was, preferred doing it through this trial, you know, than, as I say, the normal GP way of doing it. And, as I say, since, since the trial ended I’ve gone back to obviously my own surgery and, you know, you get the same little problems like I was saying before. You just don’t get so much time and it’s, you know, a sort of, a quick visit, just one or two blood pressure takings. And they’re invariably higher than they would be when you take a few extra readings. But unfortunately you can’t convince your GP that, you know, it’s, to do any more.
 
Because one thing that happens, when you come off these trials you go back to your GP, and you, at the time you’ve sort of lost contact with the trial more or less. You can still phone people up, you know, I mean you have the number. But once you’re off the trial you’re not really under their control any more, you’re back with your GP. And it might be an idea to try and keep in touch more, setting up these sort of patients’ groups, in case you’ve got any problems you want to refer back to the trial doctors. Because you may go to your GP and they might want to do something differently. You may not agree with it. So it might be an idea to get the two together and, you know, get them to liaise and perhaps you can sort out problems more, more that way. The problem with being at your GP is that he can, they do tend to come and go, you know. If you’re at the GP’s surgery, you may have the same doctor for, say, a year and then he leaves and another one comes, or you can’t always see the same doctor. So they don’t, they’re not really all that aware of your particular problem, you know.
 
Was that different at the trial? Did you tend to see the same people each time?
 
Well, it was a fairly small team, so you wouldn’t necessarily see exactly the same doctor, but you’d see one of, say, half a dozen either doctors or nurses who were there. So they all knew you reasonably well. You, they knew your, your history and your sort of medical condition. And you got to know the people there. So it saves going into all your background again, you know, and having to explain things. And so, I suppose sometimes the GP can look at the computer and see, you know, get the information off the screen, and he may not completely understand what your problem is all the time. You know, it’s not, when you actually know, somebody knows your problems, they’ve seen you several, over the last few years, you know, they get more understanding of what’s going on. So it’s, as I say, that might be an idea for, bring the two sides together a bit more, you know, comparing notes. 
People with long term or serious illness often commented on how being in the trial and having access to specialist care made them feel secure and reassured, so the end of the trial left them feeling a bit isolated and uncertain. Of course this can apply equally to the ending of any long term period of care, whether it is within a trial or not, but in Wendy’s case the trial meant her treatment lasted six months longer than it would otherwise.
 

When the trial finished, she felt vulnerable and worried whether the cancer would return. Having...

When the trial finished, she felt vulnerable and worried whether the cancer would return. Having...

Age at interview: 51
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
And as I say, I won’t know for however - I mean they have said that if, the cancer I’ve got, if it is going to return, it’ll return within two years of surgery. So I’ve hit the one year. And I said to my husband, “In a way that’s nice because all the time you’re having your treatment, you feel like you are having this insurance policy. It can’t possibly come back, can it, when you’re having treatment?” So now it’s finished, and I read up about that a lot, that people are now feeling very vulnerable at the end of their treatment, because they don’t feel they’re having anything given to them to help prevent it coming back. It’s just in the lap of the gods whether it comes back or not now.
 
Yeah, I was going to say, is it, is it kind of a bit strange at the point when it finishes and you suddenly feel --
 
Yeah, it is. I was warned that it would happen and I thought, “Yes, that’s inevitable.” And it did feel like that at first. I felt very, very sort of downhearted about it. And also you’ve got milestones. “This time last year I was feeling this, and now I feel better.” And, you know, you’ve just got to be very positive and very, put it behind you. At this point in time, as far as I’m aware I haven’t got cancer, and I’ve got as much chance as anyone else of it coming, of getting it again as the next person who’s never had it getting it in the first place. But it was very hard to describe to my children, knowing that they knew my best friend’s husband passed away very young, in his 30s, of a cancer. My mother died of cancer, and when she was in her 50s. They’d then only ever known people have cancer and die from it. They didn’t realise that people can survive it. And obviously in that time that’s elapsed, then technology’s changing all the time. And, but it was hard for me to sell it to them as that because they didn’t really believe that.
Of course in many cases people continue to have long-term follow-up, but it may not be as intensive as the monitoring they have experienced in the trial. Joanna was also pleased that she was able to continue having ovarian cancer screening when the trial finished.
 

It was reassuring to discover she could ask to come back for further ovarian cancer screening...

It was reassuring to discover she could ask to come back for further ovarian cancer screening...

Age at interview: 63
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
As I think I’ve mentioned, they also have been very sensible at the hospital I’ve been to, to suggest to anyone who wants to, after their six years, they can return for screening if they’re anxious, because everybody obviously felt very reassured. If they were being screened and nothing was showing up, they were feeling good about it. And when the trial comes to an end, suddenly you, you know, like me probably most people hadn’t checked how often you would go on doing it. You began to feel it was for life by the time you had gone for six years, and then it suddenly finishes. And the hospital have said, you know, “If you want, every couple of years you can personally request to come back and have another screening”, which I think is a sensible thing to be doing. You know, I think it’s, that is treating the people who’ve been helping pretty well. So…
 
Did they volunteer that information to you? Or did it, was it a result of you asking?
 
No, they actually volunteered that in fact. I don’t know, I probably expressed a bit of surprise that the thing had finished suddenly and, “Oh, gosh”, you know. But they, I think they actually mentioned it. I think it again was this excellent screening lady, to be honest. I think it was the, really the only first-class person I met on the whole trial who volunteered the information. Whether anyone else would have, I don’t know [laughs]. 
Some people described a mixture of relief and anxiety after the end of a trial. For others, their feelings were more just relief, perhaps because the trial had taken up a lot of their time or because of side effects or other discomfort. (See also ‘Side effects and queries about clinical trials’ and ‘Time commitment, money and other practical issues’).
 

It was a relief when the trial ended and he no longer had to cope with side effects and lots of...

It was a relief when the trial ended and he no longer had to cope with side effects and lots of...

Age at interview: 63
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Because apart from that, because it was a trial as well, you were getting needles put in and blood taken and all that on regular intervals, you know, sort of three times a day, before food kind of thing, [laughs] or whatever. You know, because they wanted, obviously because it was a trial, they were checking your blood continuously, you know. And then there was one of the guys, he really had a needle phobia, he was really bad with getting the needles, yeah. But no, I mean, like I said I think earlier, I was quite fortunate with the chemotherapy. Well, yeah, there were side effects I got after two or three sessions, a couple of sessions, the night after getting the chemo I would take the shivers. I wasn’t cold, but I’d just take the shivers. And then this is where the carer and your partner – and Helen would just bring down a duvet and just wrap it round me and, you know, and that was it. I don’t know whether it was one of the side effects, I don’t remember, I don’t recall it being as a side effect. There was a bit of numbness, itching and that sort of thing which was expected, but no, it was a…
 
But basically quite a relief when it ended, then?
 
Yeah, yeah, in that way it was. You know, here you are at six months and that’s your average, you’ve hit your average now. You’re three to nine months, you’re six months - you’ve made it. Now what happens next, kind of thing. And then you get to the stage where you hear about all the targets, you know, after a year, after two years, after five years, and of course you’re going through things, saying, “Well, will I make it to the year? Or will I make it to two years? Will I make it to five years, as time’s going on?” It’s not a depression. It’s… I don’t think I was ever depressed, not to my knowledge, but there is the concern, you know, that, “How’s things going to develop? You know, what’s going to happen?” and you’re living with it all the time. I mean, it’s very difficult. It’s easy, you know - I’m not being derogative - but it’s easy for a clinician to say, “Well, you’re cured, because you’ve not got a tumour”, but you’re not, you might have - you might not have the tumour any more but you’ve still got the after effects which you’ve got to live with, the breathlessness, the disability, unable to work, and the concern because you’ve had a cancer you’re susceptible to other cancers, you know, the rogue cell or whatever it might be is there.  
 

Celia was relieved when the trial finished and she did not have to make the daily journey. She...

Celia was relieved when the trial finished and she did not have to make the daily journey. She...

Age at interview: 67
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
And when it stopped, when the treatment stopped, how did you feel at that point?
 
Okay. You know, I was just glad I didn’t have to make the journey every day [laughs]. I felt all right, yeah.
 
You didn’t miss going?
 
And - no, not really, no. Although there were, there were some nice aspects to it, because that January was the sunniest January I ever remember, and my appointment was always in the afternoon, and I used to come back about four o’clock and there was always a beautiful sunset over the Mersey, you know, coming back along by the river and that. And I did enjoy that bit [laughs].
 
It was nice. But apart from that, no, I was just glad that, you know, I didn’t have all that travelling to do. And also that it hadn’t made me feel bad like the chemo did. And that, you know, I felt again I was really annoyed about the chemo, because I had all those horrible side effects, and it hadn’t done me a blind bit of good [laughs].
 
[Laughs] Yes.
 
Luckily, I didn’t lose all my hair. It just went a bit thin, but, you know, I had the upset stomach and diarrhoea and constipation, and all the other horrible things you have.
 
You’ve obviously got some regrets about having taken part - or is regret too strong a word?
 
No, no. I don’t regret it at all. No, I - I suppose I do regret not having the courage to stop at two and a half week, perhaps, but then again I might have found that that wasn’t such a good idea. Because this lung damage I’ve got it might be caused by the Sjögren’s, not by the radiotherapy. I’m just assuming that it was.
 
So looking back are you glad you took part in the trial?
 
Yes, oh yes, I’m glad. Glad I took part. No problem.
 
FOOTNOTE' The chemotherapy Celia refers to was not part of the trial. She joined a trial comparing different periods of radiotherapy after chemotherapy had failed to improve her lymphoma. Sjögren’s syndrome is an autoimmune condition, in which the body attacks its own moisture-producing glands, such as the tear and salivary glands. In some cases, other organs of the body are also affected, including the kidneys, liver, pancreas, lungs, blood vessels and brain. 
 

Kate's husband was annoyed when he guessed he was in the placebo group. He continued for the sake...

Text only
Read below

Kate's husband was annoyed when he guessed he was in the placebo group. He continued for the sake...

Age at interview: 38
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
The main thing with the trial was that we were getting injected with grass pollen or a placebo. So we were randomised to either get the injection with the grass pollen, or get just an injection of nothing, really. And we didn’t know, and the nurse who was running the trial, he didn’t know either. And he had some assistants as well. And so no one knew whether we were on the grass pollen or on the placebo. We had to stay in the hospital for an hour after the administration of the injection, because they explained to us from the outset that one of the possible side effects of an injection of something you’re allergic to is that you go into anaphylactic shock [laughs]. And so they had a doctor always on site and stores of adrenalin. It was a precautionary measure but a quite interesting thought. But it was nice to know that they’d put that level of thought and care into it.
 
How did you feel about randomisation and the thought that you might be ending up doing all this and be on a placebo?
 
I think, I kind of thought at the beginning - well, I thought about the odds. Obviously it’s 50'50, either you’re going to get it or you’re not. But I never really thought about not getting it [laughs]. It wasn’t until we were underway and I was clearly getting a local reaction and my husband wasn’t that we thought, you know, that is quite a commitment to make and you’re not actually - well, he wasn’t getting any benefit from it. And they didn’t make it clear at the beginning that they would make the intervention available after, at the end of the trial, if it turned out you were on the placebo. So I think he did quite well to make the commitment the whole way through and follow through on it.
 
Did your husband eventually take the option of having the intervention?
 
I think he did - I can’t remember if he did one season or two seasons, but he didn’t do the whole thing. It was just too much of a time commitment. But yeah, he definitely did one, and I think he might have done two seasons. And he did notice a benefit.
 
Do you think he regrets having been in the placebo arm as a result, or?
 
I know he was annoyed at the time, because obviously he’d made such a massive commitment to the study and he had hoped he would have got some respite over those summers. But I think he understood the benefit of doing the study, so he was okay with it. And plus there was the benefit anyway of having all these hay fever drugs thrown at you through the summer. So it did actually save us quite a lot of money [laughs].
 
And how did you both feel when the trial ended?
 
Probably relief [laughs]. Yeah, it was a big time commitment. It felt good to take part, but it was nice to get our evenings back [laughs].
Sometimes, as in Kate’s husband’s case, people who were in the placebo group may be offered the new treatment at the end of the trial if the results show it has been effective. (See also ‘Feelings about being in a placebo-controlled trial’). People who are receiving a new treatment as part of a trial may not always be able to continue on this treatment when the trial ends. It may be some time before the treatment is provided by the NHS, if it has been found to work. The information sheet given to patients at the start of the trial should make clear what will happen.

Several people commented on how important it was to know about the results of the trial and to find out what the effects of the treatment were. This is discussed in more detail in ‘Feedback of trial results’. It helped people to know that they had made a real contribution that would improve care for others.
 
Full trial results are often not available immediately, but David found some personal feedback made him feel much more positive at the end of the trial than he had expected.
 

David had expected to feel like a guinea pig, but actually felt it had been interesting and...

Text only
Read below

David had expected to feel like a guinea pig, but actually felt it had been interesting and...

Age at interview: 56
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
At the end of the trial, how did you feel when it all stopped?
 
…I expected to feel like a guinea pig, but the doctor was particularly sensitive, and obviously had a genuine interest in asthma and chest conditions. And he sort of did a full debrief, really, and for example, I found through the test that apparently I had fluctuating levels of white blood plasma, which was slightly alarming, but I was glad that he’d pointed it out. He said that it may have been to do with the serum, or it may have been to do with a local infection that I’d had during the trial. But he didn’t have a complete answer to it, but he did take the trouble to discuss it with me and thank me for taking part. And I felt that - he made me feel in fact - that I’d contributed. So at the end I didn’t feel like a guinea pig, although I had expected to, yeah.
 
It may sound an odd question, but did you miss it once it finished?
 
Sort of, yeah, yes. Yes, I did, kind of, yeah, yes. I appreciated the relationship with this particular doctor. I found him very interesting and over the course of the months I sort of developed a proper relationship with him, and it’s always interesting to have access to a doctor’s knowledge when it’s not, you know, in a surgery. It’s sort of privileged information, really, which, yeah, I found very interesting, yeah.
 
Yeah, I had no misgivings after it ended. I did feel as if I’d contributed positively to something, and that it had been worthwhile, you know, yeah.

Last reviewed September 2018

donate
Previous Page
Next Page