Tag Archive for: educational resources

Educational Resources for CLL Patients

Educational Resources for CLL Patients from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients learn more about their disease? Dr. Seema Bhat recommends resources and online communities for CLL patients looking for more information. 

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Expert Advice for CLL Self-Advocacy

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Transcript:

Katherine:

Many CLL community members are interested in learning more about their disease. So, for newly diagnosed patients, what are a few educational resources you recommend to help them learn more about their condition? 

Dr. Bhat:

There are a number of well-established support groups or educational resources for our patients. These include the CLL Society, The Leukemia & Lymphoma Society, Lymphoma Research Foundation, and then we have Patient Empowerment Network, and we have Patient Power. All these resources provide support groups, organize webinars, and have educational material for our patients. 

Katherine:

What about patients who have been living with CLL for many years, or are quite knowledgeable about their disease? Are there more advanced resources for patients to stay up to date on the latest research and treatment? 

Dr. Bhat:

So, for patients who want to search for additional resources, especially looking for clinical trials, going on this website called clinicaltrials.gov, they can first search for CLL-related clinical trials. Also, NCCN, or “National Comprehensive Cancer Network,” has patient resources for each disease, and then they can find information on CLL there, also. I would also like to say that Google is a good resource, as long as you know where it is taking you. 

Katherine:

Exactly. You may not be able to rely on everything you find. 

Dr. Bhat:

Right. 

How Can Prostate Cancer Patients Access Clinical Trials?

How Can Prostate Cancer Patients Access Clinical Trials? from Patient Empowerment Network on Vimeo.

Dr. Andrew Armstrong shares trusted resources for accessing information about prostate cancer clinical trials and reviews common barriers to participation.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More From Prostate Clinical Trials 201

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Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial


Transcript:

Katherine Banwell:

Yes, yes. How can patients find out about a trial that might be right for them? 

Dr. Armstrong:

There’s several sources. One is through their doctor. You know, their doctor can be their navigator. They will be connected either within a cancer center or be connected to a cancer center that’s in their region. So, getting a referral to a cancer center can be that open door to hearing what trials a big cancer center might offer. 

If patients are willing to travel longer distances, there are websites like clinicaltrials.gov where patients can search and find a trial, find a coordinator, find a principal investigator or doctor, contact them, and then either drive or fly to that site to access that trial. Not every patient has that means. 

But that’s certainly a resource that many patients and their family members can use to seek out those trials. And I certainly have patients that have found me in that way. 

But it’s probably more common for patients to come to you through a referral from their doctor because many sites in the community don’t have access to those clinical trials, but they know who does.  

Katherine Banwell:

What are some common barriers to accessing clinical trials? 

Dr. Armstrong:

The most important one is probably transportation. Some trials are close by, and some trials are very far away, and resources can be a major barrier. The cost of transportation, of having to be near a trial site, can be a major barrier. We wish we had all of the trials everywhere, but that’s not possible. Some trials are available at Duke, but are not available for example in Baltimore or Boston or California, and vice versa.  

Each academic institution may have their own trials. There are going to be some big trials that are available everywhere. These are like global Phase III studies. And really just talking to the physician, maybe getting a second opinion about which trial may be right for you in a certain circumstance is really part of the shared decision-making process. 

So, travel, socioeconomic status, cost concerns, those are barriers. But most clinical trials will pay for the experimental drugs. They will not charge you more money to participate in the study. And most insurance companies will pay for your participation in that trial, so that should not be a major barrier, but transportation can be. So, sometimes patients will find trials near a loved one or a family member so they can stay with them during the trial participation.