In medicine today, research is focused on developing effective and safe treatments. Indeed, progress is being made step by step, for example in the field of cancer, chronic inflammations such as multiple sclerosis, psoriasis, arthritis or Crohn’s disease, nd also in degenerative diseases such as osteoarthritis, osteoporosis or dementia. Although there is still no cure for these conditions, the people affected are much better off than they were a few years ago.
In order to evaluate the effectiveness of drugs in studies, disease-specific “scores” are usually evaluated before, during and after treatment. These scores are made up of symptoms (e.g. number of painful joints) and laboratory values (e.g. inflammation parameters).
The problem with this is that it is possible to assess the disease activity to some extent, but not necessarily how the patient is doing overall.
In our opinion, quality of life, or let’s call it “better living”, gets too little attention in medicine. This is about more than just medication. It is about comfort, motivation, mood, time for the family and much more.
As a new trend, studies are therefore increasingly using so-called “Patient Reported Outcomes” (PROs for short). This means that patients are becoming more involved in the studies. Through apps, patients (or should we say users?) report their symptoms, mood and quality of life on a daily or weekly basis. This makes it possible to characterise the disease much better and thus to better evaluate the effectiveness of drugs but also of non-drug treatments.
The problem with clinical trials is that they are expensive and complicated. For treatments on nutrition, behaviour change or new technical solutions, they are often not feasible.
To better explore “better living” for patients, apps are much better suited than traditional clinical trials. Through this, a multitude of experience reports come together. Indeed, patients act as users, but in a positive way. They are in a strong position because only they, as the people affected, can really say what really helps. And this concerns not only the activity of the disease, but also the individual quality of life.
For one patient, it can be extremely important not to have to miss half a day of work for a doctor’s appointment. A short video conference with the doctor can already bring quality of life. For other patients, it would be helpful to know more about how the bathroom at home can be sensibly redesigned, what new walking aids are on the market or how care robots can support them at home. Certainly, all people with disabilities would be helped if their condition were less stigmatising.
Caredeluxe stands for Better Living. We try to introduce new solutions, designs, techniques for diseases where the patient is in the foreground.
Contact us and tell us what has helped you to live better or ask us how we can help you.
Info@caredeluxe.com