"Why don't more cancer patients participate in clinical trials?" asked an oncologist on the panel.

This is a concern I've heard repeatedly at oncology-related conferences.

My response (as a former caregiver to a spouse with metastatic disease) is: Why does the medical system make it so hard for patients to find suitable trials? Accessing clinical trials can feel like pole vaulting into a walled city.

After losing my first husband to bladder cancer several years ago, I became a patient advocate. In the last two years, I have attended conferences, written about my experiences, and talked with many patients, caregivers, and doctors.

I am not surprised at the oft-quoted estimate that only about three to five percent of cancer patients participate in clinical trials. And I had to restrain myself from laughing out loud the first time I heard a doctor baffled about why it was hard to find trial patients.

Patients and caregivers, especially those facing metastatic disease, are utterly overwhelmed when it comes to finding a clinical trial. Already in a state of duress from the disease and prognosis, the search for a clinical trial is often a last ditch and desperate effort to save the patient's life.

Under those conditions, they encounter a convoluted and confounding landscape of numerous institutions, websites, hotlines, and well-intentioned suggestions, all of which are saturated with oncology-specific jargon. There are numerous resources to help with the search but simply sorting through the resources can be an enormous task. The National Cancer Institute (NCI) has a helpline, each pharmaceutical company has a helpline specific to its drugs, each major cancer institution runs its own trials, and advocacy organizations provide databases, too. Major hospitals and medical research centers may have patient or nurse navigators to assist but often there are too few of them to provide comprehensive help to each patient.

Patients with metastatic disease must often conduct their own research and do so between chemo appointments, prescription pickups, palliative care pain management consultations, follow up scans, lab appointments, visiting nurse appointments, and blood transfusions. In short, this is a massive workload to place on an already burdened patient and caregiver.

Just initiating a search on the clinicaltrials.gov site (a service of the U.S. National Institutes of Health) raises numerous questions for the lay person: Should you search for "bladder cancer?" Or will trials be listed under "transitional cell carcinoma" or "urothelial cell carcinoma"? Is a tumor called a "neoplasm" or a "solid tumor"? Is metastatic cancer called "metastatic" or "advanced" disease? Do you miss anything in the results if you choose one of these terms over another? And if  you find a trial there are more questions. Is its timing right for the patient? can the patient tolerate the "washout period" (of no treatment to ensure that previous treatment does not influence trial results)? Will the patient know if he is receiving the trial drug or a standard treatment?

A recent cursory search of clinicaltrials.gov using the term "bladder cancer" returned 798 results. While it is possible to refine those, a patient in desperation mode worries about inadvertently excluding any options. The search results are not lay-person friendly.

One of the trials noted that to be included, a patient must have: "treatment-refractory advanced hepatocellular carcinoma, renal cell carcinoma, bladder cancer, colorectal cancer, non-small-cell lung cancer, breast cancer and other solid cancers" and  "an Eastern Cooperative Oncology Group (ECOG) performance status of 0 or 1" and "Serum ALT/AST less or equal to 2.5 times the upper limit of normal; Serum creatinine less than or equal to 1.6 mg/dl; and total bilirubin less than or equal to 1.5 mg/dl, except in patients with Gilbert's Syndrome who must have a total bilirubin less than 3.0 mg/dl."

A patient would be precluded from participating if he or she had: "active systemic infections, coagulation disorders or other major medical illnesses of the cardiovascular, respiratory or immune system, myocardial infarction, cardiac arrhythmias, obstructive or restrictive pulmonary disease." In addition, patients with "concurrent antineoplastic therapies" and "systemic steroid therapy" or "a history of autoimmune disease" are also excluded.

These are just some of the inclusion/exclusion criteria for just one of the 798 bladder cancer clinical trials. I think patients and caregivers often give up on clinical trials because it is simply too daunting to sift through the possibilities.

Can we find a way to minimize the walled-city experience?

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her husband, Tim Louwers, in Virginia's Shenandoah Valley and San Francisco. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 850,000 patients and caregivers.

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