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• Medical research >> Clinical Trials >> Feelings when a trial ends >> Feelings when a trial ends

Feelings when a trial ends

• Medical research >> Clinical Trials >> Feedback of trial results >> Feedback of trial results

Feedback of trial results

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• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sue - Interview 01 >> After the trial Sue was sent a copy of the report and an easy-to-read summary. She was pleased that the decision aid had been shown to help.

Sue’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial looking at different types of information and decision aids about birth choices for women who had already had one caesarean. She was pleased to be involved.

• Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> At the end of the trial participants were invited to a big meeting where the results were presented and explained. It felt very satisfying to be part

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 >> Mental health trials >> Fenella - Interview 20 >> Fenella was given a copy of the journal article reporting the trial results. It was rewarding to feel her contribution had helped other people.

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 >> Screening, prevention other medical interventions >> Sabiha - Interview 19 >> Feedback of results shows respect for people’s contribution. If they don’t feel involved they may be less likely to volunteer again in future.

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 >> Not taking part in a trial >> Elizabeth - Interview 27 >> It is important that trial results are explained to participants, whether they are positive or negative. People will find out one way or another, and

Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.

• Medical research >> Clinical Trials >> Trials involving surgery >> Alex - Interview 45 >> He doesn’t remember being told if he would receive the results. He asked to see a copy, but not everyone would want to.

Alex fractured his heel in 2007. He agreed to take part in a trial comparing surgery with letting the bones heal naturally. He was randomised to the group having surgery, and his heel is slowly recovering.

• Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Merilyn would like to know how the trial is going, but she hasn’t asked. She doesn’t think she was promised a copy of the final results.

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 - Non-randomised studies >> Anthea - Interview 39 >> Anthea always asks lots of questions about how the trial is going, but that’s a personal choice to have lots of information. She’s not sure if she wou

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 >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> People who organise research have an ethical responsibility to give feedback to participants, but final results may not be available for a long time.

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 >> Long term conditions >> Kate - Interview 13 >> The research nurse shared preliminary results with them and told them about presentations he was giving, to keep them informed and engaged.

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 >> Mental health trials >> Fenella - Interview 20 >> Not all patients will be able to read an academic journal article, so other ways of presenting results must be found. During the trial, postcards coul

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 >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> It should be easier for people to get the results of trials, and researchers should make sure they build in the costs of providing good feedback.

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 - Non-randomised studies >> Julian - Interview 33 >> Julian opted to get copies of any letters to his GP, and asks for updates on his own test results. He’d like more opportunities to meet other patients

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 suggests it might be a good idea to have more formal liaison between GPs and trial staff so the GPs can learn from it and improve care.

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 >> Sarah - Interview 38 >> The trial staff said they’d make sure Sarah’s GP was told that she had osteoporosis. Later she discovered he had no record of it, so she feels she mis

Sarah volunteered for a placebo-controlled trial of a drug intended to help women at risk of osteoporosis. It involved daily injections and eventually she dropped out of the trial. (You can see Sarah talking more about her experiences on the healthtalkonline site osteoporosis, Interview 27).

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Tony - Interview 36 >> Tony explains why he took part in an early placebo-controlled trial of Viagra (sildenafil) for erectile dysfunction, and why testing against a placebo

Tony took part in a double-blind, placebo-controlled trial of Viagra (sildenafil) for erectile dysfunction following a prostate operation. He was in the placebo arm but was given Viagra after the trial ended. (Husband of Pam, Interview 21).

• Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> Kate’s husband was annoyed when he guessed he was in the placebo group. He continued for the sake of the study, but it was a relief when it ended. He

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 >> Long term conditions >> Sergio - Interview 37 >> Sergio was told at the end of the trial he had been taking the active drug, but his diabetes symptoms had not changed. He always understood the trial

Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.

• 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 >> 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 >> Mental health trials >> Anton - Interview 28 >> The end of a trial feels to him like a ‘non-event’ – he has little rapport with the researchers and so does not miss the contact.

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 >> Long term conditions >> Elvan - Interview 15 >> Elvan missed the trial when it ended. He liked the research team and was disappointed they hadn’t been able to improve his symptoms yet.

Elvan took part in a trial of medication for hypertension. His blood pressure did not improve much, but he felt well cared for and is glad to have taken part. He has since joined another trial in the same unit.

• 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 >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> When the trial finished, she felt vulnerable and worried whether the cancer would return. Having six months extra treatment in the trial felt like ‘an

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 >> It was reassuring to discover she could ask to come back for further ovarian cancer screening after the trial ended.

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 - Non-randomised studies >> Tom - Interview 14 >> It was a relief when the trial ended and he no longer had to cope with side effects and lots of blood tests, but he also felt quite worried and unsure

Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Celia was relieved when the trial finished and she did not have to make the daily journey. She has no regrets, though she still worries that the extra

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 >> Long term conditions >> David - Interview 34 >> David had expected to feel like a guinea pig, but actually felt it had been interesting and worthwhile. He was pleased to have a personal debrief with

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.