Cohort studies often require participants to answer questions about health or social wellbeing and to undertake some kind of physical examination or tests, depending on the purpose of the study.
Some cohort studies are also linked to patient medical records, so test results and information about health can be taken from these records for use in the research without the participant having to provide the information themselves.
How often do people take part in activities?
Usually there are some questions, tests and measurements that people complete when they first join a cohort study. This is sometimes called a baseline assessment. These may involve physical measurements (like height and weight), giving samples, or having scans. Sometimes there is also behavioural and cognitive testing, reasoning or memory tests.
After a set time period, people may be invited to return for tests again. Some medical cohort studies have clear timespans when participants will be seen again, such as every two, five or ten years. After having a transient ischaemic attack (TIA – a ‘mini stroke’) and joining a cohort study, Alan Y had follow-up tests three times in the first year and then at five years and ten years.
Alan Z had an appointment every year for three years where he went to his doctor’s surgery for tests that lasted about half an hour.
Alan Z had an appointment every year for three years where he went to his doctor’s surgery for tests that lasted about half an hour.
Age at interview: 86
Sex: Male
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Yes, so obviously a date was arranged and details sent to me and I attended the GP surgery in [village] in [name of GP] surgery and then I met a, a person there from the renal study group who took all my medical details including weight, blood pressure. Then took several samples of my blood and said that I’ll see you next year [laughs].And so it all went very well.
Then the second year we had a repeat performance; I was contacted at home on the phone and asked, you know, when I would be able to take part in the second part of the programme and we arranged a date and this was done again in [name of GP] with a lady doctor and exactly the same format and also took the samples away for analysation. The outcome of that they sent the information history to my GP, so my next Wellman interview which is every year, it said they’ve got the results and they showed me on the screening one thing and another and everything was sort of very, very good and then laterally, this year, had the third session on research programme; exactly the same procedure. Obviously, I don’t know the outcome of that but I’m sure if there was anything untoward, I’d hear further, so, yeah, it was fairly straight forward.
Since being diagnosed with motor neurone disease (MND), Ian has been going for a day of tests with the research study team every six months. He is impressed by how the researchers made him feel “part of the team that are researching the issue.”
Since being diagnosed with motor neurone disease (MND), Ian has been going for a day of tests with the research study team every six months. He is impressed by how the researchers made him feel “part of the team that are researching the issue.”
Age at interview: 54
Sex: Male
Age at diagnosis: 51
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And then the really, the bigger one, was when we were approached by the team at [city] to get involved with their, I think it’s called [name of study removed], which is looking at the brain, blood samples, answering intelligent questions, basically spending a day with them every six months going through a routine of tests, questions, eye tests, all that sort of thing. And when we went there the first time everything was clearly explained to us and laid out to us and, you know, it’s been great working with the team, because you feel, they make you feel as though you’re part of the team that are researching the issue. You’re not a guinea pig that’s in a, you know, “We’re going to put you in a hutch for the day and treat you like someone that, you know, we’re going to come and visit every now and again and put a pin in you and take some blood” and etcetera etcetera. It was, “Yeah, you’ll be with us for the day. We’ll have lunch with you”. You know, everything was done nicely, very, very nicely.
Keith had a series of tests when he first started a study. He didn’t have anything for two years and then he was called again for “an absolutely massive day of tests”.
Keith had a series of tests when he first started a study. He didn’t have anything for two years and then he was called again for “an absolutely massive day of tests”.
Age at interview: 68
Sex: Male
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Yeah, yeah that’s right I replied saying I wish to volunteer and take part in terms of [biobanking study] I was called to [city venue]. There was a centre there had a very, very thorough-, thorough medical examination, a whole range of, a whole range of different tests for different things.
Okay.
The normal things like blood pressure and heart rate but wider than that as well and that lasted about two or three hours in the first instance. Then after that received just from [biobanking study], received newsletters along with everybody else who’s taking part in research and that was very interesting, absolutely fascinating actually to see the way the [biobanking study] is gathering information and how the information is being used. And I didn’t hear anything for I suppose two or three years I should think and then was asked to go to [city] to their centre there and had an absolutely massive [laughter] massive day of tests, they tested absolutely everything including mental faculties as well, there was different tests on computers.
On memory?
Memory that’s right and reasoning power but, but also on top of that scanned twice in the one day and ultrasound on arteries in the neck but it was extraordinarily comprehensive”.
Taking part in birth cohort studies, which may last a person’s lifetime, can be more irregular due to the availability of funding. There may be a flurry of activities and then nothing for a while. Some people who took part in birth cohort studies remembered taking part in height and weight measurements and reasoning tests at primary school but since then have only completed questionnaires when they have come through the post or online. Jess and Anne presumed the team had access to their medical records and there had been no need to follow them up to complete other activities. Others had been invited to take part in medical tests or cognitive tests (about thinking, reasoning and memory).
Ronald recalls having a physical examination in primary school for the birth cohort study. He hasn’t been asked to do anything else since.
Ronald recalls having a physical examination in primary school for the birth cohort study. He hasn’t been asked to do anything else since.
Age at interview: 66
Sex: Male
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I think it would have been. It was at [name] school and I went there when I was eight and I think it started there.
Okay.
I can remember being in a room, I think my brother was there as well, my twin brother was there as well, being in a room and somebody, we were, we had some sort of physical examination, I remember that. Weight, height, a few questions, but really that’s all I remember…
Okay…
…and I’ve never been examined or asked any questions since.
In addition, participants may occasionally be asked if they would be willing to provide some information or samples for sub-studies linked to the cohort study. Sub-studies are additional projects which are related to but also separate to the main study, and they can involve collecting extra data and/or looking at additional topics.
What types of activities do participants do?
Depending on the subject and purpose of the study, people we talked to said they had taken part in a variety of activities. These included:
• Physical measurements, medical tests and giving samples
These can include: height, weight, blood pressure readings, eye tests, MRI scans or CT scans, ultrasounds, electrocardiograms, DEXA scans (bone density), and giving various samples (blood, urine, hair, saliva, placenta tissue). Nadera was happy to have a DEXA scan because “it’s interesting for me to know as well what’s happening inside of me”. Salma and her children gave samples of blood and urine and she completed a questionnaire in hospital with the study staff. Her children also wore activity monitors on their waist for a week. Lucy remembers every few years having to undress so that the healthcare professionals in her study could document and photograph the moles on her body.
Mr S and his wife were asked to provide saliva tests when they joined a parent and baby study. They were given equipment to take samples with at home.
Mr S and his wife were asked to provide saliva tests when they joined a parent and baby study. They were given equipment to take samples with at home.
Age at interview: 35
Sex: Male
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It was just saliva samples.
And how did you feel about that?
No, it was fine. Well, you know, basically I just wanted, first of all, you know, I wanted to know how would that work; basically, what equipment you’re going to use and everything like that and then they just explain to us, “This is the equipment. You can take it with you”. They wanted to collect it after a certain number of days or something, so they said, “Take it with you and then we’ll come and collect it from your house and we’ll take it away,” I asked the question how they were going to take it because obviously we would want to know how our saliva’s going to be taken, what type of equipment they’re going to use and so that’s what they explained to us basically.
Luke is part of a twins study and every four years he and his twin spend a day at the hospital clinic having medical tests. He describes it as “a very medical experience”.
Luke is part of a twins study and every four years he and his twin spend a day at the hospital clinic having medical tests. He describes it as “a very medical experience”.
Age at interview: 35
Sex: Male
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So the four yearly visits have changed so I went in 2012 and then again in ’16 and initially it was a morning and now it’s a full day and they provide lunch and the first time we did, I can’t, I wish I could remember all the tests and, you know, there were lung function, there were tests that put, test your bone density, a DEXA scan I think it’s called and various other scans, blood, urine, spit anything that they can sequence essentially [laugh], so they took a lot of bio samples. And then there were all kinds of like base line health questionnaire stuff and including things about your twinship, so if you knew your zygosity for example, this was very important for them to know whether or not you believe yourself to be a, a monozygotic of a dizygotic twin because they, essentially they’re different genetic groups. Monozygotic twins share, on average a 100% of their genes and dizygotic twins share 50% and so the model for twin studies uses these two groups to control for variations between them if that makes sense. And, of course, they can actually do the test themselves but, you know, it’s that sort of information’s helpful and they collect some socio-demographic and socioeconomic social data. It was quite limited, a lot of it is to do with diet. They do a lot of, well like I said, before work on metabolomics and, and nutrition, area sort of personalised nutrition. And so there are a series of sort of what I would call quite clinical tests and the clinical visit is very much sort of putting you around the different stations of those tests and it can be quite fun because of course it’s you and your sibling and if, depending on how you look at it, it can be quite competitive or amusing. Also as an adult you may not spend very much time with one another ordinarily so it’s a kind of nice opportunity to just see each other.
It’s in hospital I should add that, you know, it’s in a large [city] research based hospital. You go very high up in, in the hospital and it’s a very much, it’s a clinical environment, so, and for some of the tests for example the DEXA scan requires you to strip down and put on a hospital gown. It’s a very medical experience on the whole.
Barbara’s participation varies; sometimes she fills in a questionnaire and other times they ask her to have physical and cognitive ability tests.
Barbara’s participation varies; sometimes she fills in a questionnaire and other times they ask her to have physical and cognitive ability tests.
Age at interview: 73
Sex: Female
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Oh no not at all, sometimes it’s a questionnaire, some occasions it’s a sort of medical check with both physical and cognitive tests and the last test, the last one involved actually going to [university] and it was a day of various tests. So it, it does vary enormously.
Can you tell us a little bit about that day in [university]?
Yes I mean we had various things like sort of blood tests and I think maybe x-rays, it was really, I mean it was a full medical check and also, as I say some cognitive issues, you know, on memory tests etc. It seemed to be pretty comprehensive.
So, was it a sort of group of you went at once or...?
No, it was individually.
Douglas has blood samples taken for the research he is in. He has been told he is difficult to take blood samples from but he disagrees and says it is about the skills of the professional.
Douglas has blood samples taken for the research he is in. He has been told he is difficult to take blood samples from but he disagrees and says it is about the skills of the professional.
Age at interview: 70
Sex: Male
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Ninety per cent of the time. There was one guy who wasn’t particularly good, and he really hurt me and but the girls are normally excellent. I said, you know, “I’m a bit difficult but I don’t mind back of the hand or whatever,” and so they were quite good about that. I did one in, at the [hospital] and I got the consultant who did the blood and that was ’93 and he went through the vein and the whole of my arm went dark brown right along there and, you know, they said, ‘Oh, you should go to the hospital, you know, should complain about that.’ And I thought, ‘Well, it’s not worth it.’ It’s, my experiences of people taking blood is a competence level. If they’re good, you don’t notice. And they say, “Oh your blood doesn’t flow very well”. That’s because you don’t have it in the vein correctly because my blood flows like mad.
Some people took part in more invasive physical medical tests. Gareth had samples of blood and fat taken from his thigh and stomach. He was worried that it would be painful, and it would bruise which it did but only for a week. Although lumbar punctures are not normally painful, Roland and Ian chose not to take part in this test, which did not affect their overall involvement in the cohort study.
• Completing psychological or cognitive ability tests
These can include: memory tests, reasoning, personality tests, meanings of words, matching patterns, and IQ tests. Linda remembers taking part in verbal reasoning tests at primary school and being given a prize of ‘exotic dried fruit.’
Margaret had memory tests for a birth cohort study where a nurse came to her house.
Margaret had memory tests for a birth cohort study where a nurse came to her house.
Age at interview: 73
Sex: Female
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They’ll do memory tests with us now. So you get a booklet and they turn over the pages and there twenty words and then they get you to do something else and then they say can you write down all those twenty words [laughs] or the write down every, in a minute, write down every animal you can think of with the first letter B [laughs]. And of course under pressure of time, so.
Malcolm had a cognitive ability test which lasted about an hour.
Malcolm had a cognitive ability test which lasted about an hour.
Age at interview: 75
Sex: Male
Age at diagnosis: 48
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And one of the, some of the questions at the beginning of the test was- it was quite a comprehensive test lasted about an hour. Some of the, some of the questions were, a couple of odd ones, to test whether I could tell the difference between different animals or repeat different words and remember them. So it was very much, very much linked to see what my level of cognitive ability was at the moment and it was pretty high I have to tell you without being arrogant, it was very high. It was in the top 95% for my age so and I do crosswords every day so I, I like, I try to keep myself my cognitive ability, I try to keep it up.
Yeah, memory in terms of giving me a, a string of words which I can still remember and then asking me to repeat them a few minutes or half an hour later, so sort of words like face, purple, lily, church, velvet.
Okay.
You know, a sequence of words which I had to then repeat back. And they asked me to repeat back then and also half an hour later they asked me to sort of, to take say a number, 94 and subtract eight from it each time until I got back down as far as I could, so that was like a mental arithmetic test.
Jade remembers completing tests once a year for a twins study and filling in surveys which they did at home. Her parents also filled in questionnaires.
Jade remembers completing tests once a year for a twins study and filling in surveys which they did at home. Her parents also filled in questionnaires.
Age at interview: 25
Sex: Female
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And I think, I think they were every year.
They weren’t really regular, but I think they were about every year.
I remember them giving you little tests. Like, not maths questions, but kind of like logic questions, I guess they were designed just to test your development and stuff like that. So, it-, like, stuff like they’d have a picture of two triangles and a square, and they’d say like, “Match up a pair”. And they’d also-, I remember like surveys, lots of questions about various things, all kinds of things related to home, education, and I think my parents had to do more of those than we did probably, about all kinds of things like family life, school life, personality, behaviour, health, all of those topics you’d kind of expect from twins studies.
• Completing questionnaires or diaries
There were many different topics that questionnaires could ask about, including diet, exercise, smoking, leisure activities, occupation, education, family circumstances, and mental health (emotions and mood). Teresa had also been asked to keep a diary for the research about her diet. When Nadera joined a parent and baby study, she answered questionnaires for each of her three children about “feeding patterns and then data like height, weight, eating pattern, sleeping pattern I believe, activity”. Some people emphasised that the wording of the questions in questionnaires and discussions with the researchers was important.
Eisha filled in questionnaires about her diet and emotional wellbeing for a parent and baby cohort study she took part in.
Eisha filled in questionnaires about her diet and emotional wellbeing for a parent and baby cohort study she took part in.
Age at interview: 32
Sex: Female
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Yeah, they talked about how do you, they talked about healthy eating, so there was a lot of questions regarding, ‘What do you eat?’ ‘How many meals?’ ‘How many fruit intake is in your diet?’ and then there were question regarding, ‘How do you feel?’ ‘How your moods?’ ‘Are-, are you teary? Are you happy? So vaguely, I don’t remember clearly but I think those were the questions, yeah.
So, they were looking for if a mum is healthy, how does that impact on a baby for baby mental health and growth. If a mum is mentally, having any mental health issues, how will that impact on the weight, on the size of the baby. The food intake as well was in the questionnaires, so what I’m eating and taking in as a diet is affecting my child.
Housework and gardening weren’t recognised as physical activities when James first completed a questionnaire about his lifestyle.
Housework and gardening weren’t recognised as physical activities when James first completed a questionnaire about his lifestyle.
Age at interview: 76
Sex: Male
Age at diagnosis: 66
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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 car”. “Oh yes, it is a lot to do”. “Oh, we can’t include housework. We don’t consider that to be an activity”. I thought, ‘There is a bloody proforma questionnaire written by a man’. And funnily enough it is now considered an activity.
Mr S thinks some questions in questionnaires are personal and people may be reluctant to answer them. He encourages researchers to carefully phrase their questions and explain why they want to know.
Mr S thinks some questions in questionnaires are personal and people may be reluctant to answer them. He encourages researchers to carefully phrase their questions and explain why they want to know.
Age at interview: 35
Sex: Male
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Yeah, I’d say obviously certain questions that they do ask are quite personal, you know, some people are a bit reluctant to answer those, you know?
What kind of questions would that be?
You know, for example, you know, like you were talking about people’s private lives and all that. Certain people, I’m not saying everybody, but some people are a bit reluctant to talk about their private life and everything like that, you see, so they might want it to be, you know, explained in a different way for example.
So that’s where, you know, I think [cohort study name] might have to look into and think, “We may have to look at the way we’ve worded stuff “or like “the way this questionnaire is it could be that these questions could be a bit sensitive to the patient”, for example, and “they might not want to answer that - so we might have to look at the wording of that, the structure of that” and then obviously that might help, on a positive note improve the information. I don’t know what the results but I’m just thinking that it’s, some people are quite open, and they’ll just answer it, like myself. But some people are a bit reluctant because they think even though it’s all data protection and everything’s private and confidential - still they have that in the back of their mind, ‘do I really want to answer that question?’ Do you know what I mean?
Yeah.
But then again, I’ve seen on the questionnaires, it says, if you don’t want to say, prefer not to say, you don’t have to say but then it says that if you, I think on one of the questionnaires, it was saying that if you don’t answer them then we might not get an accurate result.
Okay.
You know what I mean, so? It like contradicts itself in a sense, where you’re saying, “Look, okay, don’t answer it, but then if you don’t answer it, if you prefer not to say, you’re not giving it here, like if you don’t answer it, yes or no for example then, you know, the results are not going to be-,” you know.
So, there’s like a little bit of pressure to…?
Pressure, yeah, yeah, yeah, I think yeah. So, I think that they could look into that and change that particular aspect.
So, can you think of an example of a question that you think may be uncomfortable answering?
I think, for example, like their religious belief. I think some people are a bit reluctant to talk about that, might have a bit of an aspect of, ‘Why do I need to answer that question?’ you know what I mean? I’m quite open about that but I think, some people think if I answer that question, ‘Oh look, is that going to differentiate me in any way’, and I think another question maybe, ‘What’s your origin?’ I think sometimes they may be thinking, if I mention that they might think, ‘oh, just targeting certain areas’. So even though I’ve always answered it myself, I’m just saying that some people may feel a bit uncomfortable with that. Or even talking about whether or not the family members have had a certain condition, you know, or an illness.
But I think, ‘Why are you asking that?’ is the thing. I think that’s the most important thing, I think if someone knows why they’re asking it then they’re going to be more comfortable giving an answer. But if you’re just saying, ‘Oh look, we want to know if you’re this, this and this?’ and I’m thinking, ‘Well that’s quite a delicate or sensitive matter, why do you want to know that?’ And they’re obviously having to think about, ‘Well, why are they asking me these questions?’ I think, like you said, if they’re given information like prior, that this is what we need it for then I think the person will be more assured.
Barbara says the questionnaires she completes are constructed well.
Barbara says the questionnaires she completes are constructed well.
Age at interview: 73
Sex: Female
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No they’re quite, I think they’re very well constructed. so somebody who’s actually been in the business, you know, you do get questionnaires from different organisations that are frankly just a waste of time because they’re not properly constructed but these are always well constructed.
The flow of the questions and also there’s an obvious, there’s an obvious, I say an obvious answer but if you’re not sure or if, you know, they do seem to cover all eventualities, you know some, some questionnaires that you get you think, ‘Well that’s not appropriate for me, why are they asking it?’ but this, all the questions are always appropriate.
Sometimes questionnaires were sent directly to participants. Gill said she found it interesting to fill in the questionnaire every two years because each time they were on different topics. When it arrived in the post, she thought “‘Oh this is interesting. I wonder what questions they’ll be asking this year?’”
Other times, there was a health professional who asked the questions or took the participant through the questionnaire. Salma sat with a health professional who filled in a questionnaire on an iPad. Anthony, who was involved in a study for 15 years after he had his knees replaced, used to go to the hospital to answer questions: “mainly it was just how flexible the knees were, how I was able to do long walks and just general exercise that I was happy that the knees they gave me were performing as they should be”. George went every two months to see the research study team where they ask him questions about his stroke and how he is getting on.
Barbara likes having the paper version of the questionnaire to fill in. She can reflect more on her answers and make changes more easily.
Barbara likes having the paper version of the questionnaire to fill in. She can reflect more on her answers and make changes more easily.
Age at interview: 73
Sex: Female
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The format’s the same so, you know, there’s always a covering note just checking your address and everything that you’re still living where you’re living. So I think, I think it’s, I think we’ve just got used to it over the past 70 years.
Apart obviously the classic demographic information is more or less the same each time. It covers lots of things like, you know, I think one of the questions is, you know, how you’re, how you’re feeling, are you more confident than you used to be or less confident than you used to be that’s something that I think is probably a bit of a leitmotif something that’s that goes through each time. But as I say you can just tell that they’re interested in a particular aspect or two or three particular issues really each time, and they vary from time to time.
They always come as paper questionnaires, that’s interesting, you know, it’s never been done electronically, maybe they think because of our age that we, you know, that we may be less conversant with electronic techniques I don’t know, I never thought about that.
[Laughter] And you’re happy with the paper version, or would you?
Happy with the paper version. I mean, one could do it electronically but I think somehow the paper version is quite good because you can think more about it, you can sort of reflect and look at the questions in more depth. I know doing other things online you just go through from sort of frame to frame and don’t bother to think, ‘oh maybe I shouldn’t have said that, maybe I didn’t think that way.’ But with this, you know, you know that if you, if you think, ‘no maybe that wasn’t quite right,’ you can go back and alter it easily.
The activities Teresa has been asked to do varied over the timespan of the birth cohort. She remembers the questionnaires were sometimes long and detailed.
The activities Teresa has been asked to do varied over the timespan of the birth cohort. She remembers the questionnaires were sometimes long and detailed.
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Then later on I remember doing little tests, little intelligence tests and things. But you, you sort of take that as the norm really, I mean, I think you, well certainly I did as a child sort of took what came. And I don’t remember much though in my teens to be quite honest whether there’s just so much else going on I don’t know, but I imagine I must have made some input and carried on. I remember it more later when I’d become a mother and there seemed to be a lot then, a lot about diet sometimes the questions were quite invasive because you had to acquire a lot of material, you had to keep a record of your diet for two weeks. You had to write down the recipes if you’d made something. You had to include absolutely everything; it was really detailed. As time has gone by, it’s been very clear that the questions are following a certain line of research and for me it’s, it’s quite interesting I, there was a whole section where they were asking about how hot do you drink your drinks, how cold do you drink your drinks and I think that’s leading to something very specific.
Where do activities take place?
People we talked to had completed cohort study activities in various places: in a hospital, at a GP surgery, at a university, or at home.
Sometimes people said the researcher was present while they completed their test. Keith was glad he could complete his reasoning tests alone in a booth. Gareth felt happy there were only three researchers in the room while he had his tests; he says, “I certainly wouldn’t have been happy if there’d been a constant stream of different people wandering in”.
For some studies, researchers visited people in their homes. Margaret Ann recalls that someone from the study came to her home and took her height and weight measurements and asked her questions about her health and diet. One of the times the nurse visited Teresa, without warning she threw a box of matches at her to check her reflexes.
Margaret recalls having tests at school and then, over the course of the study, filling in questionnaires and a nurse researcher visiting her at home to do physical tests.
Margaret recalls having tests at school and then, over the course of the study, filling in questionnaires and a nurse researcher visiting her at home to do physical tests.
Age at interview: 73
Sex: Female
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I remember when I was at school, at primary school that, from time to time, I was given some kind of little test to do and also from time to time, one or two medical assessments.
And were they all at the school?
Not always at the school. The, obviously the written tests tended to be done at school and the medical ones, I think must have been a doctor who was involved in schools or something like that.
And do, did you have to travel somewhere to do those ones?
Just locally. I don’t remember many details about it.
They’ll send you a questionnaire and the questionnaire will be health and what’s the word I want, sort of social things. So, they’ll ask, ‘Have you been in hospital recently, within the last year?’ ‘Have you had any health problems?’ Obviously, ‘Have you had any bereavements or illness of a close family relative?’ ‘Have you moved house?’ that kind of thing. You can see what they’re looking for and you send it back and they’ll use that in their, whatever line that they’re interested in at the moment.
There’s kind a lot of tick boxes. There’s always the opportunity to write more if you want to.
And how long are the questionnaires?
Mm. Four pages, something like that.
So at the moment the involvement is just this questionnaire once a year?
Mm and from time to time, they will actually send a nurse researcher round. I don’t know how often they do that, and I don’t know if they do it with everyone and she will do blood pressure, height or weight, grip, some sort of balance thing, I think; that type of thing.
Great and was that always the case or has it changed that, the format of the involvement?
I think we had more of that in the last decade or two.
A researcher came to Brian’s house for an hour to carry out physical and memory tests for the birth cohort study. One time, he had to stand on one leg and stand up on a chair.
A researcher came to Brian’s house for an hour to carry out physical and memory tests for the birth cohort study. One time, he had to stand on one leg and stand up on a chair.
Age at interview: 73
Sex: Male
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But there were papers, there were papers, that you had to read and fill up and I’m sure there were more tests that I can’t remember. And I know in the latter years, you know, I have had people come to the house and had medicals and memory tests was one of the things. Now of course they talk about memory and physical, you know, standing up on chairs and sitting down, all these things. Standing on one, I think you’re, one interviewer mention standing on one leg but that’s another one, especially with your eyes closed which I find is almost impossible now to stand on one leg with your eyes closed [laughter] but there we are, that’s getting old for you.
It sounds like it’s sort of quite fun, not too arduous?
Well it’s perfectly alright and it’s not arduous at all, no it’s not arduous at all. It only takes an hour or so all in, in the scheme of things, that’s nothing is it? [Laughs]
Anthony, John, Keith and Emily were issued with medical equipment to use at home: Anthony wore a heart monitor and a Fitbit for a week to record physical activity. John, Keith and Emily were issued with a blood pressure monitor to take blood pressure readings at home.
Emily was issued with a blood pressure monitor connected to a mobile phone. She took her blood pressure three times a day and the results were sent back to the hospital.
Emily was issued with a blood pressure monitor connected to a mobile phone. She took her blood pressure three times a day and the results were sent back to the hospital.
Age at interview: 68
Sex: Female
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I think they explained that it would be a number of blood tests, a number of urine tests, spaced out over six months and then sort of every 12 months thereafter. So oh yeah and doing blood pressure as well and a couple of times, or at least once anyway they give a blood pressure monitor to have here at home and to do myself which was quite interesting. So it all seemed totally, you know, apart from the blood test non-invasive and very easy to do.
Anthony didn’t expect to receive any results based on the readings of a heart monitor and Fitbit. He thinks the researchers would have told him if there were any concerns.
Anthony didn’t expect to receive any results based on the readings of a heart monitor and Fitbit. He thinks the researchers would have told him if there were any concerns.
Age at interview: 76
Sex: Male
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Well, they’re easy enough to wear, there’s absolutely no problem at all. You know, it was, they gave me different patches, so I could have a shower and put a new patch on – re-clip it. But the only time we didn’t wear it, of course, was when I was in the shower.
Okay, so otherwise you…?
I wore it all the time, sleeping and throughout the day.
Okay, you said that you didn’t get a feedback from that? Are you expecting a feedback from that test?
Not really. I guess if there’s anything peculiar they would have let me know, but I haven’t, had no feedback from that or the wrist monitor.
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