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• Medical research >> Clinical Trials >> Appointments, monitoring, questionnaires >> Appointments, monitoring, questionnaires

Appointments, monitoring, questionnaires

• Medical research >> Clinical Trials >> Appointments, monitoring, questionnaires >> Appointments, monitoring, questionnaires

Appointments, monitoring, questionnaires

• Medical research >> Clinical Trials >> Communication between different health professionals >> Communication between different health professionals

 

Communication between different health professionals

• Medical research >> Clinical Trials >> Side effects and queries >> Side effects and queries

Side effects and queries

• Medical research >> Clinical Trials >> Under-researched topics/priorities for other research >> Under-researched topics/priorities for other research

Under-researched topics/priorities for other research

• Clip
• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> Amanda describes a double-blind trial of pro-biotic yoghurt to control irritable bowel syndrome. She felt the research nurse wanted a particular resul

Amanda has taken part in a trial of pro-biotic yoghurt for irritable bowel syndrome, and withdrew from a trial about early interventions to prevent diabetes. She is setting up a website for the public to design their own trials.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> She has been trying to set up a trial on the internet to test if selenium supplements prevent cancer.

Amanda has taken part in a trial of pro-biotic yoghurt for irritable bowel syndrome, and withdrew from a trial about early interventions to prevent diabetes. She is setting up a website for the public to design their own trials.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Anthea - Interview 39 >> The doctors explained very honestly their uncertainty about the treatment and the risks. Careful monitoring is important.

Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.

• Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> There was a small risk from the injections of anaphylactic shock, but there were safety precautions in place. They kept a diary to report other reacti

Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna describes the ovarian cancer screening trial, comparing no screening, a blood test and a vaginal ultrasound scan.

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Rose - Interview 17 >> Rose wonders if she saw a doctor less often because she was in a trial. The nurse dealt with side effects. She felt some people assumed she didn’t nee

Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> Julian describes the high quality of care and monitoring in his Phase 1 trial.

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

• Medical research >> Clinical Trials >> Organising trials >> Sir Iain Chalmers - Interview 30 >> Treatment for prostate cancer can have unpleasant side effects. Because the best way of treating it is uncertain, a trial comparing different treatmen

Iain is a keen advocate for well-designed randomised controlled trials to test treatments.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Anthea - Interview 39 >> Anthea describes what a Phase 1 trial is. No-one knows what the side effects will be and whether it will work, but she is very closely monitored.

Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.

• Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny noticed there seemed to be a pattern that the side effect of coughing happened when she hadn’t eaten for a while. The researcher wasn’t interest

Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.

• Medical research >> Clinical Trials >> Not taking part in a trial >> Gill - Interview 10 >> Gill thinks people should not go into a trial expecting it will solve their immediate problems. Trials are about the future, and the bigger picture.

Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> He has sometimes picked up mistakes in the letters sent to his GP from the trial. This is a good reason for patients to see copies of the letters.

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

• Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Since the bypass surgery she has had pain for several years. She wonders whether it was because of the new way the operation was done as part of the t

Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

• Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil joined a trial of medication for high blood pressure mainly to see staff who specialised in his condition and had more time than his GP. Helping

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Leslie - Interview 43 >> Leslie was taken off the trial by hospital staff when he became so ill he was rushed into hospital by ambulance.

Leslie took part in a placebo-controlled drug trial of rofecoxib (Vioxx) for prostate cancer prevention. He became extremely ill, but doctors monitoring his progress did not pick up his symptoms. He took the drug company to court, and won compensation.

• Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> She has found it hard to deal with how the scar looks. She’d have liked to talk to other women patients about how they felt. The hospital could not of

Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

• Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny’s husband learnt he had diabetes when he was being monitored during a previous trial. They both volunteered for another trial because it helps t

Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Leslie - Interview 43 >> During the trial, Leslie became more and more ill, but the trial staff didn’t seem to connect his symptoms with an effect of the trial drug estimated

Leslie took part in a placebo-controlled drug trial of rofecoxib (Vioxx) for prostate cancer prevention. He became extremely ill, but doctors monitoring his progress did not pick up his symptoms. He took the drug company to court, and won compensation.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> She thought being in the trial would mean she would be really well looked after by experts. But after agreeing to take part she never saw the professo

Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna thought the questionnaire about feelings was badly designed. She tried to point out that her feelings were related to her husband’s illness, no

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sabiha - Interview 19 >> Sabiha would have used her own annual leave to cover time off work for trial appointments.

Sabiha took part in a trial of breast screening for younger women (under 50). More recently she volunteered for a trial of cholesterol-lowering drugs but was not eligible because her cholesterol level was too low.

• Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> The offer of a generous expenses package was attractive to David, though looking back he feels it was fair compensation for his time and effort.

David volunteered for a placebo-controlled trial of a new treatment derived from mouse DNA to improve asthma symptoms. He later discovered he was in the group taking a lower dose of the treatment, but he would not have minded being in the placebo group.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sabiha - Interview 19 >> Appointments at evenings and weekends would make it easier for people. A token payment for their time might also help, and would not put pressure on p

Sabiha took part in a trial of breast screening for younger women (under 50). More recently she volunteered for a trial of cholesterol-lowering drugs but was not eligible because her cholesterol level was too low.

• Medical research >> Clinical Trials >> Mental health trials >> Anton - Interview 28 >> A small payment doesn’t worry him, but if you pay too much it may attract the wrong people. When it’s a commercial company running a trial he expects

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Pam - Interview 21 >> Pam finds her regular scans reassuring. Talking to fellow patients helps keep her spirits up, and the nurses are very encouraging. Hospital feels like

Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)

• Medical research >> Clinical Trials >> Long term conditions >> Harry - Interview 07 >> Harry had regular monitoring tests. Most staff were excellent, but one nurse started a debate with him and made him cross. That didn’t seem a good way

Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

• Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> When Danny’s blood pressure was monitored during the trial, one doctor would never tell her the measurements. She felt she had a right to know and was

Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.

• Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> David had to attend several appointments for tests and a series of injections. In between he had to take his own peak flow (breathing) readings and re

David volunteered for a placebo-controlled trial of a new treatment derived from mouse DNA to improve asthma symptoms. He later discovered he was in the group taking a lower dose of the treatment, but he would not have minded being in the placebo group.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Jenny - Interview 40 >> Filling in the questionnaire about her symptoms prompted Jenny to realise that the treatment wasn’t working, so she went back to her GP.

Jenny is in a trial of different ways of treating heavy periods at her GP surgery. The trial compares standard treatment with a new kind of coil or intrauterine device which releases a hormone in the womb.

• Medical research >> Clinical Trials >> Mental health trials >> Fenella - Interview 20 >> Fenella explains the trial treatment for borderline personality disorder and why questionnaires were important to check the effect on her mental state

Fenella took part in a randomised trial of partial hospitalisation compared to standard community treatment for borderline personality disorder. Results showed the group she was in (partial hospitalisation) had better outcomes.

• Medical research >> Clinical Trials >> Long term conditions >> Angela - Interview 23 >> Angela was asked questions about mobility and activities of daily living, but also about her emotions and relationships.

Angela was diagnosed with Parkinson’s disease after taking part in a trial on nerve conduction. She has since been in a randomised trial of different drugs for Parkinson’s and would happily take part in another trial, despite having had side effects.(Angela is also on our Parkinson’s disease site, Interview 10).

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> Caroline felt the researchers were only interested in certain questions which weren’t really about her experience. The questionnaire was long and repe

Caroline’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> The questions in the ovarian screening questionnaire didn’t seem to be about things women themselves would think important. Input from consumers would

Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.

• Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Follow-up after the trial doesn’t include questions about the surgical scar and post-operative pain, or about wider lifestyle issues, which Merilyn fi

Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Her GP asked her permission to send monitoring information about her to the trial staff. She has no more direct contact with the trial, but hopes she’

Celia took part in a randomised controlled trial comparing different periods of radiotherapy for lymphoma. She was would have preferred the shorter course; she was allocated to the longer course but took part anyway.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Pam - Interview 21 >> Remembering to take the trial tablets is quite daunting. Pam has to save the empty packets and take them back, though that doesn’t prove she actually

Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> The tablets Julian takes are very large and patients find them hard to take, but this is something that can’t be changed half-way through a trial.

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

• Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny put her tablets into a dosage box from a previous trial. Staff were very concerned that unused tablets were out of the original packets. If this

Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.

• Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he was in expert hands.

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.

• Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil was happy with his first experience of a trial, and has recently volunteered for a similar trial. He values the expert supervision.

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> Involving people in research can seem tokenistic, but it’s still useful to have comments on leaflets and questionnaires to make them more understandab

Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.

• Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> It’s difficult to advise others, but Julian recommends taking part in a trial, both because it helps others and because you get close monitoring and a

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

• Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil encourages others to think about taking part in a trial unless they have real fears. You’ll be safe and well looked after, and can always pull ou

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.