Why High-Risk Patients Are Still Willing to Visit a Site Weekly?

At the beginning of this global lockdown, my colleagues and I had some assumptions, concerns and predictions about the impact of Covid-19 on clinical trials and more specifically – patient enrollment. 

We anticipated a lot of worried patients who, themselves belonging to various risk groups, would be anxious to make hospital visits a regular part of their treatment. This is why a big part of our focus was creating resources for sponsors and investigators highlighting technological solutions that can take a trial from the traditional to the virtual. 

Many of our predictions seemed to be coming to life when there was a drop in applications through our patient platform FindMeCure which makes it easier for patients to search and apply for clinical trials. We were now managing 2-3 times fewer applications and patient interest shifted from clinical trials to Covid-19 prevention seemingly overnight. This trend remained consistent throughout the last weeks of March and most of April. 

However, as disaster fatigue settled in, a noticeable change occurred. Covid-19 was no longer the topic of most interest and this was reflected both in the questions we were receiving and in the searches on our blog – ‘regular’ diseases like UC, obesity, migraine etc. were in the spotlight once again. The number of applications started increasing at the end of April and we were getting some interesting responses to the 2-week survey we had set up. 

Other diseases still exist

When it became clear that Covid-19 was going to be a serious global issue, the novel virus quickly became the centre of attention. Some governments cancelled all other healthcare interventions – a dentist appointment was suddenly irrelevant in the face of a pandemic. 

Naturally, most patients had other priorities on their mind. People taking immunosuppressive drugs to manage their disease became anxious about contracting the coronavirus, and finding a better treatment for their Myasthenia gravis or Ulcerative colitis was not their first concern. Many of those who were still interested in accessing treatments in development, on the other hand, found out the trial they applied for had been suspended with no start date in sight.        

Whether disaster fatigue was the catalyst or a sense that governments were gaining control over the situation, this low level of interest didn’t last very long. Pancreatic cancer, depression, diabetes don’t suddenly stop requiring treatment just because there’s a new disease to worry about as well. We began getting questions about trials for infertility again – a reflection of people being ready to start planning ahead despite the current situation. 

Patients surprisingly not scared

We’re not simply relying on observations and interpretations, of course. To see if our assumptions would prove correct, we conducted a 2-week survey the results of which you can access by downloading our Patient Insights Study.

We wanted to see if the pandemic had scared patients away from trial sites and whether they were motivated enough to wait for their trial of interest to resume after the lockdown. The findings were surprising for all of us as most of the patients who filled out our survey belong to the risk group – compromised immunity, underlying conditions, or over the age of 60.  

They reported high levels of motivation to participate even if they had to wait for their chosen trial to resume (80.8% of our respondents). An overwhelming majority of those patients are willing to visit hospital sites weekly (60.8%) and only a very small percentage share that they are not visiting a hospital before the pandemic is over.  

Remote/virtual trials are still a good idea

While these results are encouraging and we are sincerely hoping that clinical research will go on, the adoption of technology for remote monitoring of patients, eConsent, ePRO and even virtual protocol visits is still a good idea. 

Many patients even before the Covid-19 pandemic fueled this discussion were sharing their concerns with us about the distance they would have to travel to the nearest trial site. We’ve had numerous questions asked about the frequency of visits that meant a patient would have to take time off work or find someone to watch their children. 

This interview between the Vice President at Parexel, Rosamund Round, and Trishna, a woman who lives with MS, perfectly illustrates the struggle of patients.

Many patients want to join a clinical trial either because their current treatment isn’t working or because there is no effective treatment for their condition at all. In the same time, however, busy life, distant trial sites or the limitations of their condition prevent them from joining. 

Although patients reported high willingness to join a trial and attend site visits, centring their needs is what is going to have the biggest impact on retention rates once they are in the trial. To better understand the patient journey and to gain full access to the results of our survey, you can download our Patient Insights Paper completely for free.

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