Cancer Patients Struggle to Understand Clinical Trials

[rasbridge]

by Zosia Chustecka

September 11, 2017

 

 

Cancer patients struggle to understand what is involved in a clinical trial, even when they have participated in them. In a survey of 1090 adult cancer patients, more than half did not understand the concepts of clinical equipoise or randomization.

In the survey, 63% of patients thought that "my doctor would make sure that I got the better treatment in a clinical trial," and 55% said that "my doctor would know which treatment in a clinical trial was better."

The concept of randomization was also not understood. The survey involved 1090 patients who were attending 14 cancer centers in Ireland. About a third (30%) had already taken part in a clinical trial, but more than half of these patients did not understand that randomization means that the treatment would be allocated by chance. Among the cancer patients who had not participated in a clinical trial, the proportion was even higher ― 73% did not think that the choice of treatment was made on the basis of chance.

"This shows poor understanding of randomization, and we know this is a difficult concept for patients," commented lead author Catherine Kelly, MD, associate professor of medical oncology at the Mater Misericordiae University Hospital and University College in Dublin, Ireland.

"There is also the concept of clinical equipoise, that the reason you are doing the clinical trial is because there is uncertainty over which is the best option," she said in an interview. The results here were rather surprising, she said, because even patients who had been in a clinical trial still felt that the treating physician would choose the best treatment and, even more worrying, that the physician would make sure that they were getting the best treatment.

These responses show that patients "very much trust their cancer doctors, with the expectation that the doctor will know what is the best treatment and will ensure that they get it," Dr Kelly said.

The findings suggest that oncologists and their research teams need to explain more clearly these concepts and suggest a need for more training of communication skills, Dr Kelly suggested.

"Doctors have a responsibility to properly inform their patients in this regard, because they are the ones patients trust the most," Dr Kelly said.

"To provide informed consent when participating in a trial, patients need to understand these key concepts ― and doctors explaining them well is essential to alleviating any fears that might prevent patients from participating. For example, many didn't realize that clinical trials are not just an option for when standard treatment has failed," she observed.

Reacting to the findings, Dr Bettina Ryll, chair of the ESMO Patient Advocates Working Group, commented: "The question of whether patients understand clinical trial methodology is a very valid one, and what makes this study so interesting is that more than a quarter of the patients questioned had actually been on clinical trials before," she said.

"However, I was surprised at the median age of the cohort: 60 years. It would be interesting to compare the data collected here with younger patient groups, who access information in a very different way," Dr Ryll observed. "I would also expect to see differences across tumor groups: among breast cancer patients, for instance, who make up almost a third of the study cohort and for most of whom there is a well-established standard of care, clinical trials are likely to be of less interest than among lung cancer patients, for whom the standard treatment is less effective."

Source:  http://www.medscape.com/viewarticle/885482

 

 

 

[LeeSmithG]

Well I had an operation yesterday 08:00 I had my penis reduced, as it hurts my partner when erect. They removed part of the sacs that fill with blood, to make it not so broad.

 

I was met in admissions, went through many questions and asked many questions was spoken to by three (3) surgeons and three (3) nurses and I was under local anasthetic and the surgeon spoke to me throughout procedure.

 

I was given all needed information before and during procedure.

 

When I was done I was taken off to a recovery room, was offered tea or coffee, I refused and then was offered a free ride home, I refused as I prefer to get the train and a bus home.

 

The job the workers whom represent the N.H.S. was emaculate.

 

I know it's not cancer, but it's medical so I hope you understand I was well pleased.

 

I did feel some cutting and snipping and sewing.

 

I am comfortable and no pain just sligtly sore, I am a big boy so will live.

[rasbridge]

On 9/19/2017 at 9:27 AM, LeeSmithG said:

Well I had an operation yesterday 08:00 I had my penis reduced, as it hurts my partner when erect. They removed part of the sacs that fill with blood, to make it not so broad.

 

I was met in admissions, went through many questions and asked many questions was spoken to by three (3) surgeons and three (3) nurses and I was under local anasthetic and the surgeon spoke to me throughout procedure.

 

I was given all needed information before and during procedure.

 

When I was done I was taken off to a recovery room, was offered tea or coffee, I refused and then was offered a free ride home, I refused as I prefer to get the train and a bus home.

 

The job the workers whom represent the N.H.S. was emaculate.

 

I know it's not cancer, but it's medical so I hope you understand I was well pleased.

 

I did feel some cutting and snipping and sewing.

 

I am comfortable and no pain just sligtly sore, I am a big boy so will live.

Any problems post-surgery?

[dcs18]

1 hour ago, rasbridge said:

On 9/19/2017 at 8:57 PM, LeeSmithG said:

Well I had an operation yesterday 08:00 I had my penis reduced, as it hurts my partner when erect. They removed part of the sacs that fill with blood, to make it not so broad.

 

I was met in admissions, went through many questions and asked many questions was spoken to by three (3) surgeons and three (3) nurses and I was under local anasthetic and the surgeon spoke to me throughout procedure.

 

I was given all needed information before and during procedure.

 

When I was done I was taken off to a recovery room, was offered tea or coffee, I refused and then was offered a free ride home, I refused as I prefer to get the train and a bus home.

 

The job the workers whom represent the N.H.S. was emaculate.

 

I know it's not cancer, but it's medical so I hope you understand I was well pleased.

 

I did feel some cutting and snipping and sewing.

 

I am comfortable and no pain just sligtly sore, I am a big boy so will live.

Any problems post-surgery?

 

         

[LeeSmithG]

On 3/19/2018 at 7:58 AM, dcs18 said:

 

         

Hello.

 

My penis became very bloated and it took two to three weeks of warmish salt water soloution applied three times per day.

 

So no fun times for me for three weeks. It is now fine and can do the duty myself and female partner wish to perform.

 

My partner does not feel extra pain now and it's a lot better and she is happy.

On 3/19/2018 at 6:27 AM, rasbridge said:

Any problems post-surgery?

 

My penis became very bloated and it took two to three weeks of warmish salt water soloution applied three times per day.

 

So no fun times for me for three weeks. It is now fine and can do the duty myself and female partner wish to perform.

 

My partner does not feel extra pain now and it's a lot better and she is happy.