A consortium is developing a new implant that can improve the quality of life of MS patients. But do patients really want a device in their bodies? And will this implant make care better and more efficient? This is what PhD student Laurenske Visser from Erasmus School of Health Policy & Management (ESPHM) has investigated. "Too often, something is thought out on the drawing board without giving patients a voice."
Multiple Sclerosis (MS) is a chronic neurological disorder. This drastic disease, which affects the central nervous system, can affect anyone and unfortunately cannot be cured. However, there are treatments that can slow down the progress of the disease. The Optogenerapy consortium, which is made up of eleven different parties, is developing an implant that constantly releases the existing drug 'interferon beta' (INFβ) into the body. This should improve the quality of life, save costs and, moreover, a more constant dose can lead to fewer side effects.
The implant works on the basis of optogenetics (read more about it in this article about Honorary Doctor Karl Deisseroth), a technology that allows you to use light to control specific cells in the body. On paper, the advantages are great. For example, patients no longer need to inject themselves, resulting in annoying prick marks and flu-like symptoms. Administering tablets also has side effects and, just like injections, you can accidentally skip a dose. "People sometimes forget something, you can hardly blame them. But a missed dose is not good for the course of the illness", explains Laurenske Visser.
Give the patient a voice
But do patients really want an implant in their body? For the PhD student and doctor, this is a very important question: "It is extremely important to get patients on board; if that does not happen, a new technique will never succeed", she explains. For example, patients had reservations about placing the implant in the back, because it would make it more difficult to sit down. "That's why one of the development partners ended up adapting the design of the device so that it could be placed in the abdomen. This shows how important it is to include the end user in the development of medical solutions. I think that at the moment, too often something is thought up on the drawing board without giving the patients a voice."
Gates at Schiphol Airport
For the focus group sessions, the PhD candidate sought contact with MS patient associations in order to identify needs and preferences, as well as possible objections. Visser was also able to offer reassurance on questions such as: 'Will I still be able to go through the gates at Schiphol?' or 'Will I be able to get an MRI? Furthermore, the PhD student investigated whether the new administration is more cost-effective than, for instance, lancing. And what was the outcome? Patients are generally positive about the implant and the treatment method also scores well on cost-effectiveness. "Normally, you have to prick up to three times a week, whereas the implant is inserted in one go and then it works. So it's not surprising that it's cheaper."
The implant is still under development and research on laboratory animals is now underway. The PhD student also sensed disappointment among some patients that an implant only makes administration easier, but does not offer a cure. Nevertheless, Visser believes that the device is a valuable addition in the treatment of MS and can improve quality of life. "If you don't have to keep pricking yourself, you are reminded less of the disease, and that's already a big win."