Patient-Related Issues

Guest Expert: Barbara Biedzycki: Decision-making regarding clinical trial participation

Last Updated: Aug 30, 2012

Originally posted by Rose Mary Padberg, AccrualNet Team Member, on the former AccrualNet site on Jan 03, 2011.

 

Welcome to our first 'Guest Blogger' of 2011, Dr. Barbara Biedzycki. Barbara is a Clinical Research Associate at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore. She recently completed her doctoral program and much of her research has been on decision-making regarding clinical trial participation. I found her recent article titled, "Decision Making for Cancer Clinical Trials Participation: A Systematic Review," in the November 2010 Oncology Nursing Forum a rich resource of knowledge and insights.Enjoy Barbara’s comments below and consider posing your questions to this well- qualified expert!
 

 

Dr. Barbara Biedzycki's Post:

 

Many factors influence accrual to cancer clinical trials. The process of decision making for cancer clinical trial participation is an understudied and potentially critical element to making a significant impact to clinical trial accrual. This systematic review of recent research conducted in the United States highlights the importance of decision making for cancer clinical trial participation.

 

Decision making seems to be a very important component to cancer clinical trial participation with its value not yet fully recognized. Ethics and regulatory guidelines lead us to encourage autonomous decisions for cancer clinical trial participation. Does autonomous decision making mean that the decision to join a cancer clinical trial is made in a vacuum? Could there be internal and external, formal and non-formal influences that factor in on decision making? Do we consider the impact that the clinical research team, family, friends, health care providers, and the media have on the personal decision to join a cancer clinical trial?

 

While the literature addresses patient and system barriers, such as physical, financial, and informational access, focusing on the process of decision making may yield higher accrual rates and increased satisfaction among research participants. As consumers of health care gain more power over their decisions, whether they want it or not, we need to figure out how we can best help them to decide whether joining a cancer clinical trial is best for the individual and society.

 

Through the years, I have seen how patients struggle to make decisions as to whether or not to join a cancer clinical trial. This is a very important decision and often comes at a critical time, when the patient is dealing with a new cancer diagnosis or an opportunity to change the treatment plan. People make decisions differently. They may make important decisions together as a family or alone with or without the considerations of others’ thoughts on the decision. Although there is not a lot known about the process of decision making for cancer clinical trials, I am fairly certain that when a patient is confronted with a cancer clinical trial is not the best time to learn a new way of processing information to make a decision.

 

What are your thoughts on the process of decision making? Should we have a role in the process, or should it be strictly autonomous? How can we facilitate decision making, or do you think we should stay out of the decision making process?

 

Sincerely,

Barb Biedrzycki

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Originally posted by: Anonymous on the former AccrualNet site on Mar 09, 2012.

 

You can find Dr. Biedrzycki's article in AccrualNet--just click here.
And if you are interested in further reading on this topic, Dr. Biedrzycki published a subsequent article, also available on AccrualNet, just click here. This article reports the outcomes of a study using a Research Decision Making Model.

Linda

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Originally posted by: ellen on the former AccrualNet site on Mar 09, 2012.

I definitely agree that understanding the decision-making process could yield important insights for clinical trials accrual. Yesterday in an AccrualNet Conversation, we talked about the importance of family in this process. From the well-known role reversal phenomenon we could guess that family involvement in decision-making with older adult patients (i.e., that of their adult children) would be almost as important as it is with pediatrics. Not that that would diminish the need for objective input from knowledgeable clinical trial staff though. It might be interesting to study the difference in the accrual rates of older adults with involved adult children vs those without.Anybody interested? Ellen

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