Uncertainties and worries about taking part in cohort studies
We asked people who had been invited to or taken part in cohort studies whether they had any concerns about doing so. They talked about...
What time commitments and other practical issues are involved in cohort studies?
Before deciding whether or not to join a cohort study, it is important to think about the time commitment and other practical issues involved. These factors will vary from study to study, and the people we spoke to had different ideas about what they were happy with. The three main aspects that people spoke about were:
- How long it takes to do the study activities
- How often they are asked to do study activities and length of study
- Where they will do study activities (e.g. at home, at a hospital, at a GP surgery, at a university, or elsewhere)
Time taken to do study activities
Cohort studies can involve lots of different activities and these can take up varying amounts of time. Alan Z says his appointments last about 30 minutes. Brian has had visits from researchers to carry out tests: “it’s not arduous at all, it only takes an hour or so, all in. In the scheme of things, that’s nothing.”
Gill says it takes about 30 minutes to complete the annual questionnaires for her study and then she posts it back to the researchers.
But research activities could also be time consuming. Keith had one appointment for a study which took five hours and involved “a battery of tests.” Salma remembered one questionnaire which took at least one and a half hours to fill in. She didn’t mind though because she was waiting for an overdue appointment and felt the research would ultimately benefit “the wider community”. For one study, Malcolm wore a heart monitor for five days, took his blood pressure regularly and wore a Fitbit to record his level of daily activity.
The frequency of study activities and study length
The number of visits and frequency of completing activities varied across the studies. In some studies, this changed over time for each individual. Alan Y had follow-up appointments every six months initially, then once every year, one appointment at five years and one final appointment at ten years. Some studies planned to follow participants for their whole lives whilst other studies, such as the one Alan Y is part of, have a set number of years that each participant is involved.
Whilst each activity or study visit might be quite short, the amount of time involved could add up over many months or years of taking part. The people we spoke to were mostly happy with this arrangement. Linda was proud to support medical research and, in her study, it only required participants “to give up a small amount of your time to do it”. Jennifer agreed: “it’s not any hard work. It’s nothing”.
Alan Z is part of a five year renal (kidney) study. He doesn’t feel this is too long a commitment, and that it is a good length of time for the researchers to gather data.
A few people, like Elaine and Jade, had decided not to enrol or stopped taking part because of time constraints and other commitments. Elaine decided not to join a biobanking study because she was already involved in other medical research and the appointment times would have clashed. Jade and her sister stopped taking part in a twins study because they found some questions and tests “intrusive”.
Some people talked about extra commitments that might make it harder to take part in a cohort study. Mr S thought time was a big factor for many people and especially for parents: “the type of lives that we live are very busy”. Nadera had three children under the age of five when she first became involved in a study. She said it was hard to do extra activities with babies “when they needed me, crying, nappy changing, all this.” Keith said one factor for him was that “I was about to retire so had a bit more time on my hands.” Isobel had to stop taking part in a study about asthma when she changed jobs to shift work and could no longer go to the hospital on her days off.
Being retired, Anthony feels he has the time to take part in a study. He thinks it is important that younger people take part in medical research as well though.
The locations of study activities
Sometimes people took part in study activities at home. This included questionnaires which arrived in the post or were accessed online, but also sometimes study staff came to the participant’s house. Alan Y’s study included both home visits from a research nurse and visits to a hospital for tests. He found his blood pressure was lower at home because he was more relaxed there.
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.
Emily completed a questionnaire over the phone for one study and it was difficult remembering all the tick box options without seeing them written down.
Jade stopped taking part in a twins study when she was 12 years old. She didn’t like being separated from her sister to complete the tests at home, and she would have liked opportunities to meet other twins.
Other times, participants were asked to travel to the researchers to do some of the study activities. This could mean a long journey to get to where the researchers were based. As Alan Y pointed out, the journey plus parking can be quite stressful at some hospitals. Douglas also travelled for his study and although it wasn’t very far from where he lived, “in the morning, you hit so much traffic. It’s a nightmare.” Emily had asked the researchers if it was possible to consent into the study over the phone or by video messaging, but they said no and she found this appointment “a bit tedious”.
For Linda and Alan, travelling to the hospital or GP surgery to complete research activities was less of a concern because they were within walking distance. Malcolm wore a heart monitor for five days for a study he was part of. He thought it was helpful that he could just put the equipment in an envelope and hand it back to his local GP surgery, rather than return it to the researchers based at a hospital.
Emily finds it very convenient that the researchers come to her local GP surgery to do the follow-ups.
Some studies will pay the travel expenses of participants. This was the case for Linda, Douglas and Margaret. George was part of a study which arranged a taxi to take him to meetings and then return him home again. Teresa had attended “a big visit” to a hospital for tests which required her to fast (not eat). To get to the hospital, she had to travel a long way, and the study paid for her hotel the night before.
George is involved in stroke research. A taxi is arranged to take him to meetings and then return him home afterwards.
Communication and relationships with professionals running cohort studies
Cohort studies often follow people up over a period of time, sometimes many decades. Good communication from researchers is important so that study participants are...