Sickle Cell Clinical Trial Perceptions
Patients with severe sickle cell disease have positive views towards SCD clinical trials. Many of them recognize these trials provide the benefit of furthering the development of treatment options and are willing to participate provided they are made aware of the risks and benefits.
- Attitudes towards SCD clinical trials are generally positive with patients recognizing the importance of clinical trials. A sample size of 291 patients found that at least 77% to 92% of patients express positive views about trials.
- Another survey by Pfizer found that 76% of respondents had positive or neutral attitudes toward SCD clinical trials. Many of the respondents from the study indicated they would be willing to participate in a trial if they felt informed and if it was recommended by a health care professional.
- Additionally, participants stress the importance of 'giving back to society' as their biggest motivation for choosing to participate in a trial so that 10-20 years down the line, patients like them will have better options.
- Patient concerns about SCD clinical trials are largely about the potential or long term risks as well as the specific health benefits they might expect. Many want clear, detailed, and transparent information to help them balance the benefits and risks.
- Some patients also have concerns about not being able to participate due to the severity of their disease. One patient expressed, “The severity of my disease is not yet to a point where I am bold enough and comfortable enough to be among the first few trials."
- Furthermore, many of these patients want to participate in trials where they feel cared for. One patient expressed "a soul awakening" experience taking part in a SCD clinical trial provided by the NIH. The patient described, “I experienced burgeoning humanity—compassion, empathy, and a genuine concern for my disease,” he said. “I thought I was going to have to justify my circumstances, validate my disease, and prove that sickle cell exists all over again. But I didn’t.”
- The importance of increasing patients' and healthcare providers' awareness of the clinical trial opportunities is also crucial as many patients state they are usually unaware of any trials or rather have very little information regarding one. Community-based networking and social media are noted as the best ways to increase awareness.
- The need to establish more trust and respect between researchers and patients is also noted by patients as equally important.
- While there was no information with regard to preferred travel time for SCD patients, studies have shown that there is a greater need for travel support in clinical trials. A study found that cancer patients travel an average distance of 25.8 miles for their clinical trial visits showing the difficulty many patients face to get to trial sites.
To find details for how adults with severe SCD feel about SCD clinical trials we searched a wide range of scholarly articles, medical publications, medical news articles, and media articles such as the FDA, NCBI, NIH, and ClinicalTrials.gov to find more information on patient attitudes towards clinical trials. Using this research strategy we were able to find some insightful research on what SCD patients think about clinical trials as well as their concerns however, there was scarce data to inform the question of how far they would be willing to travel to take part in a SCD trial. As a result, we included the consensus regarding travel time for patients who have participated in clinical trials.