#RAMatters: perspectives of a healthcare professional

Interview with Professor Dr. Rieke Alten, Head of the Department of Internal Medicine and Rheumatology at Schlosspark-Klinik, University Medicine Berlin.

What is the focus of your practice/research?

I am Head of the Department of Internal Medicine and Rheumatology, Clinical Immunology and Osteology at Schlosspark-Klinik, part of University Medicine Berlin, where I also serve as the director of the Rheumatology Research Centre.

What are our main tasks, practically speaking? We have both in-patients and out-patients clinics, as well as a day-care department. The day-care approach is quite novel, with patients just coming in for a day each time to get both treatment and, importantly, teaching and education (we call this “Rheuma-School”). Patients appreciate it. In some cases, they come in once a year, mainly for systematic review and to get comprehensive therapy, as well as to learn about new treatments. We primarily treat patients with rheumatoid arthritis (RA), Spondyloarthritis, Psoriatic Arthritis, and also those with other autoimmune diseases.

RA affects patients’ lives so deeply. Do you feel this is under-acknowledged?

We participated in an initiative (supported by Lilly) called RA Matters, of which we have recently confirmed final publication of our work. The term RA Matters is a very suitable one, because when people are diagnosed with RA, it changes their lives, especially young women, who represent one major segment of patients. I think that, despite the fact that we have very good treatment nowadays which leads patients to remission or low disease activity, we still encounter many patients with problems like fatigue, morning stiffness, and sleep problems. But these are not easily recognized by doctors, because doctors assess painful and swollen joints and not what is ‘behind the curtains’ and might actually also be clear symptoms related to RA. Fatigue in particular, really represents a highly unmet burden for RA patients.

How important is improved communication between healthcare professionals and patients in treating RA?

Most healthcare professionals stress that they want to have good communications with their patients. But most admit that they just do not have the time! At a recent internal meeting, I arranged working groups where colleagues had to play the patient or the doctor, to explore the notion of shared decision-making. And those that played the patient found that the doctor did not give them enough time! Most healthcare professionals claim to engage in shared decision-making, but in fact, this is not really the case. But I think that genuine shared decision-making is the single most important factor here. If too little time is spent assessing what a patient really feels and wants to achieve, there is no shared decision-making.

What could be done from a policy standpoint specifically to enhance prospects of patients?

Certainly, in this context we need to look at incentives and reimbursement. The conversations between a doctor and their patient are an important part of any intervention. In fact, studies indicate that a doctor begins assessments, on average, after a patient has said three sentences.

We need more young rheumatologists! In Germany and elsewhere in Europe, we just do not have enough. We need to establish incentives to bring more young doctors into this field, and to prioritize it more at universities.

Do the latest political/policy developments at both German and European level leave you optimistic?

In Germany, we have made positive moves towards better reimbursement of assessments, meaning patients have greater opportunity to provide their views in detail. There is traditionally a discordance between the evaluation of a patient’s health status done by a healthcare professional and a patient: usually, the patient feels much worse than the HCP thinks! I think this could be gradually changing, thanks to these developments.

Where do you see RA treatment in 10 years?

For me, the most important area is biomarkers, which we still do not know enough about. We do know a bit about epitopes, and this has already helped us to better predict which patients respond better to certain types of therapies. I think that genetic markers will give us more clues about bringing the right treatment to the right patients, much earlier. And then, of course, I hope we will see a huge improvement in diagnostics, which today remain too slow. The delay in Germany still averages over one year.

On the European level, we have seen a very important initiative called “Don’t Delay, Connect Today” which aims to get patients to take appointments as soon as possible, ideally within a month of first symptoms (usually swollen joints). But I’m positive. When I started in rheumatology, nearly every patient ended up in a wheelchair. Now, no one will end up in a wheelchair. We are on the right track, but not quite there yet.

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