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Why Do Patients Drop Out Of Clinical Trials?

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doctor and patient discussing test results
Patient Centricity

Clinical organisations spend billions each year on patient recruitment, and the average trial extends recruitment by 71%, costing sponsors millions. More than two-thirds of trials fail to meet their goal

Patient retention is a huge issue in many trials, and some clinical trial designers will even consider a dropout rate as high as 30% in their calculations. While some sponsors accept this as par for the course of the clinical journey, it doesn’t have to be this way. 

Instead, we can tackle the challenge of patient retention by asking the right questions, listening to the patients’ needs, and anticipating their problems before they’ve even occurred. Put simply, clinical trials are more successful when designed around the patient. Patient centricity is the future of healthcare and lies at the heart of everything we do at mdgroup. 

In this article, we look at how to create patient-centric clinical trials that reduce the patient dropout rate from 30% to 0%.

6 Reasons Why Patients Drop Out Of Clinical Trials

When or why patients choose to leave a trial is often a personal and unpredictable matter. However, there are many reasons that can be controlled to improve patient retention. We take a look at six of the most common reasons below.

1. Financial cost

Attending a clinical trial can put considerable financial strain on a patient and those who may accompany them. Not only might patients lose money in hours of missed work, but they may also have to bear out-of-pocket costs, such as transport, travel, and sometimes relocation. 

Furthermore, they may sometimes have to pay for medical costs if they require additional testing that their insurance or national healthcare systems do not cover. 

2. Time and scheduling conflicts

It’s crucial to recognise that patients invest a significant amount of time in clinical trial participation. This may conflict with other life commitments, such as full-time employment or childminding. Some patients may be single parents who need to take their children to school at a certain time, while others cannot afford to risk their job security by taking time out. Caring for an elderly family member or a pet can also lead to schedule conflicts.

3. Lack of understanding and engagement

Many trial participants have a hard time understanding the terminology used in clinical research.

For instance, a 2013 report carried out by the Center for Information and Study on Clinical Research Participation (CISCRP) found that participants who dropped out early were almost twice as likely to struggle to understand the consent form than participants who completed the trials. Accessible language, regular communication, and dedicated support for patients are key. 

4. Long-distance travelling

Long travel times to distant locations can be particularly challenging, especially for patients in urban areas, and for elderly participants. Studies have shown that residents of non-urban areas are more willing to travel long distances than those in urban areas. Men are also more likely to travel longer distances, whereas long travel times are more likely to dissuade women from completing a trial.

5. Anxiety and stress

The same CISCRP report mentioned above found participants who drop out of clinical trials early tend to have lower levels of self-confidence, be less sociable and feel more anxious. These participants are also more likely to find site visits stressful, and often do not feel self-motivated enough to finish the trial

6. Family commitments

Clinical trials can sometimes put a strain on families, as parents may need to be separated from their children for a longer time, or only one parent may need to attend a site visit with a child. If a parent has to attend a trial with their child, they may have trouble coping on their own or being away from their partner. 

How To Reduce Patient Dropouts

Each of the problems listed above has a solution and addressing them in a way that makes your patients your priority can dramatically improve patient retention. 

By taking the following steps, we can help you create a clinical trial experience that has patient-centricity at its heart. 

1. Swift reimbursements and stipends

Offer swift financial reimbursements and stipends not just to the patients who participate in clinical trials, but also to anyone who may need to accompany them. Our patientprimary services make it easy for patients to submit their expenses using our primarius app or via email, fax, or post, and to receive reimbursements through prepaid cards, bank transfers, meal vouchers, or cheques. We also offer stipend payments that help participants cope with any potential financial loss through lost work.

2. Scheduling support

Provide tailored support to navigate a patient’s scheduling needs. Our team sends patients notifications and reminders of clinical visits by phone, or via the primarius app, making it easier for patients to manage their time. Furthermore, our dedicated team of research nurses can perform simple tasks at the patient’s home, workplace, or school for convenience.

3. Accessible communication

Make sure all patient documents are written and presented in an accessible way. Our translation and interpreting services also ensure patients have access to the information they need. Our rigorous analysis of the patient population enables us to write clinical research content that is easy to understand, breaking down terminology into clear terms, and using phonetic language where it is appropriate. This all makes complex terms and processes easier to understand.  

4. Travel support

Support patients with travel to and from clinical sites. We provide a full planning service that includes customised and flexible travel packs, and our travel agency is there to assist with last-minute changes and cancellations. Bespoke travel support means we can choose the right accommodation for patients and their families, and our extensive analysis of site accessibility enables us to inform patients of any potential issues so that these can be addressed, as well as local points of interests such as restaurants, pharmacies, or shops.

5. Communicate with patients directly and regularly

Keep in regular and direct communication with patients throughout the trial. Our personalised patient liaison services ensure patients keep in constant contact with our team of research nurses through our app, via phone or email. We also liaise with The Patients Association in order to create the most patient-centric experience we can. Putting patients in touch with advocacy groups and forums can also help them feel understood, less isolated, and can help assuage any worries. We’re proud to facilitate important conversations with patients, families, healthcare professionals, and patient associations.

6. Support patients’ families

It’s not only patients who are impacted by participating in clinical trials, often their families need support too. We offer bespoke support for families so they can attend clinical visits and spend time together over longer periods of time. Home nurse visits can also be arranged to suit the patients’ needs, wherever possible – keeping patients in their homes and with their loved ones. 

In Summary

If drug developers wish to stay ahead of the curve and get their products to market, they need to put patients first in order to reduce clinical trial dropouts. The clinical trials of the future will either be patient-centric, or they will not deliver at all. 

True patient-centricity greatly improves patient retention and makes the process of clinical product development more efficient, more meaningful and valuable to patients, as well as more sustainable in the long term.