Navigation Links
Parents experience difficulty with consent process in pediatric cancer trials
Date:10/22/2010

BOSTONCompared with adult cancer patients, parents of children with cancer were more likely to be dissatisfied with the informed consent process for participating in clinical trials, according to a study from Dana-Farber/Children's Hospital Cancer Center. The findings will be presented at the 42nd Congress of the International Society of Paediatric Oncology (SIOP) in Boston on Saturday, Oct. 23.

Parents who had agreed to their children's enrollment in treatment trials said they felt hurried in making the decision, the researchers said. They also perceived themselves as less well-informed about the clinical trial protocols than did adult patients, even though tests showed they understood the issues equally well.

"These findings were consistent with what we suspected, given the different contexts in which adult and pediatric clinical trials are offered," said Steven Joffe, MD, MPH, senior author of the study. "But I didn't expect such large differences."

The researchers administered questionnaires to 47 parents and 204 trial participants within two weeks after the clinical study began.

Results showed that only 64 percent of parents felt they had enough time to learn about the trial, compared to 87 percent of adults. The parents were also less likely (79 percent to 93 percent) to report that they had sufficient opportunity to ask questions.

Even though they scored about the same on objective tests about the trials' particulars, parents of children with cancer rated themselves as less knowledgeable (79.5 percent) than did adult patients (87.8 percent).

Joffe, an ethicist and pediatric hematologist/oncologist at Dana-Farber/Children's Hospital Cancer Center, attributed much of the disparity to the differing contexts in which adults and pediatric patients are offered clinical trial participation.

"The adult patients tended to have solid tumors and had lived with their disease for a long time. Most of the adult patients were offered a trial because they had relapsed or their disease had progressed," he noted.

"For these patients, there wasn't as much urgency in getting started on a protocol, and they had moved beyond the initial crisis of learning that they had cancer."

Conversely, about three-quarters of the pediatric patients were facing a new diagnosis of cancer usually a blood malignancy like leukemia.

"Often they were in the hospital and their parents had known about the diagnosis only for a day or two, and they had to make urgent decisions at a time of tremendous shock and emotional upheaval," Joffe said. "The parents were often overwhelmed and it made them feel less certain they understood the information they were given about the trial."

Joffe said the study confirms concerns that have already prompted efforts to alleviate the confusion surrounding decisions made in the middle of an emotional crisis. For example, some medical personnel now make a return visit to patients or parents "after the initial storm has passed" to make sure they have understood the protocol correctly.

Also, clinical researchers, in some cases, are relieving clinical study recruits of the necessity to make decisions on all aspects of a trial right away, he said. "Often there are randomizations to one treatment or another that occur later in the overall trial, and we are delaying the consent process for those aspects rather than asking people to make all those decisions on Day One."


'/>"/>

Contact: Teresa Herbert
teresa_herbert@dfci.harvard.edu
617-632-4090
Dana-Farber Cancer Institute
Source:Eurekalert

Related medicine news :

1. 1 in 8 parents forgoes pediatrician-recommended care
2. Overprotective parents may impact heart anxiety in adults with congenital heart conditions
3. Parents report a widely prescribed antibiotic is effective for fragile X treatment
4. Parents at highest risk for depression in the first year after childs birth
5. Parents Who Clash More Likely to Spank Kids
6. One Troubled Adult Child a Drag on Parents Mental Health
7. 1 in 5 Parents Missed Work for H1N1 School Closings: Survey
8. Simple tools help parents understand a childs risk of obesity, make positive changes
9. Parents Overestimate Children's Diets as Healthy
10. More than a million parents with minor children are cancer survivors
11. When Parents Smoke, Kids Weight, Behavior May Suffer
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/27/2016)... ... 2016 , ... TopConsumerReviews.com recently awarded their highest five-star rating to Best Buy ... in the United States and Canada wear eyeglasses. Once considered to be a purely ... make a fashion statement. Even celebrities use glasses as a way of creating an ...
(Date:6/26/2016)... Carolina (PRWEB) , ... June 26, 2016 , ... ... of a new product that was developed to enhance the health of felines. The ... centuries. , The two main herbs in the PawPaws Cat Kidney Support ...
(Date:6/25/2016)... Austin, TX (PRWEB) , ... June 25, 2016 , ... ... Fellow of the American College of Mohs Surgery and to Dr. Russell Peckham for ... popular and highly effective treatment for skin cancer. The selective fellowship in Mohs Micrographic ...
(Date:6/25/2016)... ... June 25, 2016 , ... As a lifelong Southern Californian, Dr. Omkar Marathe ... from the David Geffen School of Medicine at UCLA. He trained in Internal Medicine ... his fellowship in hematology/oncology at the UCLA-Olive View-Cedars Sinai program where he had the ...
(Date:6/24/2016)... ... June 24, 2016 , ... A recent article published ... unfamiliar with. The article goes on to state that individuals are now more comfortable ... less common operations such as calf and cheek reduction. The Los Angeles area medical ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... and SAN CLEMENTE, Calif. , June 24, 2016 ... mobile pulmonary function testing company, is now able to perform sophisticated ... by ndd Medical Technologies , Inc. Patients ... hospital-based labs.  Thanks to ndd,s EasyOne PRO ® , ARL patients ... get any needed testing done in the comfort of her own ...
(Date:6/24/2016)... -- According to a new market research ... Safety Pen Needles), Needle Length (4mm, 5mm, 6mm, 8mm, ... Purchase (Retail, Non-Retail) - Trends & Global Forecasts to ... for the forecast period of 2016 to 2021. This ... 2021 from USD 1.65 Billion in 2016, growing at ...
(Date:6/24/2016)... Belgium , June 24, 2016 /PRNewswire/ ... announced the appointment of Dr. Edward Futcher ... a Non-Executive Director, effective June 23, 2016.Dr. Futcher ... and Nominations and Governance Committees.  As a non-executive ... provide independent expertise and strategic counsel to VolitionRx ...
Breaking Medicine Technology: