Searching for Clinical Trials: Lessons Learned as a Caregiver

I became a caregiver for my mother in 2016. At that time, I was not fully prepared for this role and was unsure of what to expect. My mother was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2014, a disease that has no cure. It was tough to think that at some point she would no longer be able to work or complete the daily tasks that she once finished so effortlessly. Unfortunately, that point came quickly, and my family and I dropped everything to make sure our mother had the help and support she needed.

Since IPF has no cure and no known treatments, we sought alternate routes to help my mother with her symptoms to lead a more comfortable life. These included pursuing supplemental oxygen, and new pulmonary treatments, with the ultimate goal of having her qualify to be on a lung transplant list. After exhausting these treatments, I was unsure of what other options were available to her.

Searching for a Clinical Trial

Clinical trials are research studies performed with people that are healthy and those with health conditions and are aimed at evaluating a medical, surgical, or behavioral intervention. Sometimes a trial can be the primary way that researchers find out if a new treatment, like a new drug, diet, or medical device is safe and effective in people (National Institutes of Health 2020). I had seen and heard information about clinical trials for other diseases, but never for IPF.

My family and I often heard about new medical research findings or new drugs discovered to treat a disease, which led us to believe that finding a clinical trial would be easy. However, as a caregiver, finding a trial for my mother proved to be more difficult than expected. When we began searching for clinical trials, we quickly discovered that there were very few studying her condition. Also, guidance, education, and resources for finding a clinical trial were lacking.

My family’s goal was to find a trial that would make my mother healthy enough to be placed on a lung transplant list, but I was unsure whether my mother would qualify to take part in a trial, including what level of physical capability she needed to be in. After countless hours researching trials and multiple phone calls to various institutions, we finally found a trial that we hoped would be the one. Unfortunately, our challenges were not yet over.

My mother experienced difficulties with meeting studies’ eligibility criteria. This was disheartening and frustrating, especially given the immense time, effort, and resources it took to find a potential trial and visit the study location. One particular trial was being conducted at several different locations around the country. The first study site she visited did not accept her because she did not pass one of the assessments she had to complete. However, we learned that she could try to enroll again at another site. Upon arriving at the second study site, the study team would not allow her to take part in the physical exam because she did not meet certain study criteria at the first site. Considering how difficult it was for her to travel in the condition she was in, this situation was extremely disappointing.

The frustration could have been prevented if both study sites had properly communicated with us and with each other prior to scheduling. Unfortunately, as time went on, my mom’s condition deteriorated, preventing her from participating in any additional trials or becoming eligible for a lung transplant.

Reflecting

As a caregiver, you play a central role in advocating for your loved one’s care. In reflecting on my experience searching for clinical trials, I learned several important lessons:

1) Prepare a list of questions to ask clinicians to help get you started looking for a clinical trial. You can find a list of questions on the National Institutes of Health website.

2) Be proactive in searching for clinical trials. Exhaust all options when searching for clinical trials for your loved one. Make sure to use clinical research tools that help you find trials or connect you with institutions who are conducting trials.

3) Communicate with clinicians and study teams so that you and your family understands what is involved, the criteria for inclusion, factors that influence not meeting the inclusion criteria, and why the research investigator may decide that you do not qualify for a trial.

Among methods that are used to search for clinical trials, only 10% come as referrals from physicians or nurses. Therefore, it is imperative to proactively seek out clinical trials for your loved one, if this is the route you choose to pursue. One useful resource is Trials Today at ResearchMatch. This resource is free and can help you find a list of studies that may interest you.

There is room for improvement when it comes to communication with clinicians and among clinicians. Although the latter is out of your control, you can control having clear and concise communication with healthcare professionals. Caregiving can be overwhelming and stressful, but asking questions will lead to more clarity for you and your loved one. For example, a useful question to ask your physician may be: “Can you suggest any resources where I might learn about clinical trials for my loved one’s condition?” This question helps the clinician guide you to proper resources that could help initiate your search for clinical trials.

As the anniversary of my mother’s passing comes up, I always remember that though her days were difficult, she faced all of her challenges with such strength and stride that it made caregiving a dear part of my family’s life.

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