James – Cohort studies

James is a part of a cohort study. He has been treated excellently by the medical professionals running the study but has experienced side effects from the medications they gave him.

James was a part of a cohort study investigating vascular diseases (e.g. strokes, heart attacks). He was invited to join the study through his GP as he had experienced a transient ischemic attack (TIA). He was motivated to join the study because he could be seen by a specialist quicker than he would otherwise. As part of his involvement in the cohort study, James filled out questionnaires about his lifestyle and had a series of tests including an MRI and ultrasound. He says that he could not have asked for better treatment by the professionals running the study. He particularly appreciated how they took the time to summarise James’ illness, what had happened, and what medication he needed to take.

After his TIA, James was prescribed statins to reduce his cholesterol, aspirin and ramipril to reduce his blood pressure, and dipyridamole to keep his blood flowing. He found this quite overwhelming as he had never taken this much medication before. After being on the medications for a few weeks, James experienced another TIA and had to go back to the hospital. This was upsetting for him as he is a full-time carer for his wife and needs to be healthy to look after her. James decided to stop taking the statins after watching a television programme where another person was having similar symptoms on statins. After James stopped taking the statins, he went back to the hospital for a follow-up appointment and he filled out another questionnaire as part of the cohort study. The researchers also provided him with a blood pressure machine so that he could take his blood pressure 3 times a day at home. At this appointment, James told the doctors running the clinic and the study team that he had stopped taking the statins, and they agreed that he should stop taking them.

About 3 years ago, James started experiencing nose bleeds, a cough, and sore muscles. One day, when James was working on his allotment, he could not get up. He believes these symptoms were side-effects from the ramipril, so he stopped taking this medicine. After one day of stopping taking this tablet, James described himself as feeling much better. When James spoke to his doctor about this, he was tested for polymyalgia rheumatica (a condition that causes pain and muscle stiffness), but the test came back negative, so he was put on steroids to restore his muscle mass. James reported his problems to the health professionals he saw at the clinic and at each study appointment. James did not think about leaving the study because he believed that participating in the cohort study research was necessary to access both the medication and the rapid-access clinic, and he feared having another TIA or a stroke.

Towards the end of his time on the study, James began to feel “fed up” because every questionnaire included the same questions. Some test results suggested he was experiencing cognitive decline, but James thinks this was because he misheard one of the instructions. James also flagged to the researchers that their definition in the questionnaires of physical activity excluded housework; the researchers seemed to take note as it was later included in the questionnaire. James; participation in the study finished after 10 years.

James is also in another cohort a study looking at pain in relation to lifestyle factors. The study researchers send James information about the project and a questionnaire. His motivation for joining the study is to help other people.

Interview conducted in 2019.

Housework and gardening weren’t recognised as physical activities when James first completed a questionnaire about his lifestyle.

Age at interview 76

Gender Male

Age at diagnosis 66

Oh yes, everything, lifestyle because when I did the lifestyle study. In fact, tell you something humorous; What activities, you know, how active are you? I said, Well I have to be, I’m responsible for a four-bedroom detached house and garden which I have to cook and clean and wash and shop. I’ve got a large allotment which one of my wife’s allergies, she, she builds up oxalates in her body, so we have to know if we can where the vegetables come from. So, I became a keen vegetable gardener and have actually won five Banksian medals, which is the RHS Gold award and you can only take part every three years, so fifteen years. And I said, I maintain a large allotment. I also cycle around the village. I’ve got an old bicycle because you have to go the bank, the post office, the doctor’s, library, the shops and it’s much easier to get on your bike than mucking about with a ca. Oh yes, it is a lot to d. Oh, we can’t include housework. We don’t consider that to be an activit. I thought, There is a bloody proforma questionnaire written by a man. And funnily enough it is now considered an activity.

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A researcher visited James and his wife at home to complete a follow-up. Previously he had gone to a hospital to complete activities for the study.

Age at interview 76

Gender Male

Age at diagnosis 66

And you said the researchers came to your house last time…

Yes.

hey did the ten-year review. Is that normal or would you have to go to hospital?

Normally, I’d go, I went to the hospital for the previous ones but because my wife is also on the study would you believe, because she had a minor stroke just over a year ago, 18 months ago I think, but she can’t, it’s so difficult, she’s in the wheelchair, getting to them and so they said, No, no, we’ll come to yo. And from whether they change their modus operandi, I got a letter saying, You’re due for your ten-year follow-up, could we make an appointment to come and see you?’ I didn’t even have to say come and see me.

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James was invited to a study through his GP after having a transient ischaemic attack (TIA). He agreed because it helped give him quicker access to a specialist clinic and team of professionals.

Age at interview 76

Gender Male

Age at diagnosis 66

Anyway, she sits down, sits me down and asks me what my symptoms are. I said, I just felt dizzy and I felt that someone had knocked me over. If I had been in a crowd, I would have thought someone had done that, knocked me over I’d only got halfway through the symptoms and she’s reaching for the phone and I thought, This isn’t good. So, she got onto the [cohort study name], you know, at the hospital and discussed something with them and she said Would I like to take part in the study because what I’d had was a TIA you know, what one of these are?

Yes, yep.

I said, I don’t know anything about it but what are the options I said if I have to wait for NHS, how long before I get an appointment She said, Oh, four to six weeks I said, What happens if I volunteer for the study She said, Ten o’clock tomorrow morning Enough said.

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