“We Hope to Create a One Stop Shop for Patients and Their Carers” - Interview with Prof. Susanne S. Pedersen

Prof. Susanne S. Pedersen is part of the TIMELY advisory board. She works at the Department of Psychology, University of Southern Denmark, and at the Department of Cardiology, Odense University Hospital. Her research focuses on the interplay between psychology and cardiology (heart and mind), with emphasis on the psychosocial consequences of heart disease and its treatment on patient-reported outcomes and prognosis, the role of the patient's psychological profile on health outcomes, and how to optimize patient information provision and treatment using a multi-disciplinary approach, including e-health solutions. Susanne is working on several projects, including the EU-funded H2020-project ESCAPE.

Susanne, you are leading the ESCAPE project. What are the goals of this project?

With ESCAPE we wish to improve the care for patients with multimorbidity but also their carers. Both are challenged by the impact of the multiple diseases, particularly because most countries do not provide integrated care. Hence, we decided from the very beginning that we wanted to include carers to see if we can simultaneously improve their experience.

So, what are the objectives of ESCAPE? Basically, with ESCAPE, we want to develop and evaluate the clinical effectiveness, cost effectiveness, and cost utility of an integrated holistic biopsychosocial patient centered intervention that is specifically adapted to the needs of elderly patients with multimorbidity and also involving their informal carers. So that's the first objective.

The second objective is to introduce and test quality indicators to assess the quality of healthcare for patients with multimorbidity within a comprehensive treatment concept. The third objective is to contribute to the guidelines for multimorbidity and develop recommendations readily adaptable for routine care, and as a model for the treatment of other multimorbidity constellations. Because, of course, we had to make a choice in terms of the inclusion and exclusion criteria. And the final fourth point is that we want to customize and extend a multi-cloud platform based upon the imergo® e-health platform. We consider this platform essential to support the ESCAPE intervention, also processing clinical information and something that perhaps could, if it works out, be implemented or deployed across various European countries and languages.

The imergo® e-health platform is also essential for documenting medications for example, because we know that patients with multimorbidity are prescribed many different kinds of medications, with the risk of drug-to-drug interactions if it is not coordinated between the different medical specialists. This can even be potentially lethal for patients. If you have heart disease, you go to the cardiologist. If you have another disease, you go to another specialist. But the specialists may not necessarily talk to each other, which can lead to these adverse outcomes for patients. One of the goals of ESCAPE is also to see whether we can reduce the prevalence of drug-to-drug interactions.

What are current challenges in the multimorbidity management and how could ESCAPE overcome them?

With ESCAPE we wish to rethink current practices for elderly patients with multimorbidity, i.e., those 65 years and older. We know from current clinical practice that the care for patients with multimorbidity is suboptimal. Patients and their carers are faced with a “silo approach” and fragmentation of care. This is not only potentially dangerous for patient health, it may potentially contribute to the inequality of care, as well as reduce the quality of care and its effectiveness. Moreover, it is likely unsustainable due to increasing costs, which is not really money well spent.

It would also potentially help patients and their carers to feel more confident. Let's imagine that you had a husband with multimorbidity, then you would have to figure out how the system works in terms of: “This person has maybe three or four different diseases, but you need to go to four different specialists and do they talk to each other”. Are you confident that your spouse actually gets the best treatment?

So hopefully ESCAPE will be able to contribute to changes related to how we treat patients with multimorbidity. We hope to create a one stop shop for patients and their carers, where medical specialists are working together, and where we are able to also decrease costs and improve the general quality of care.

“With ESCAPE we wish to rethink current practices for elderly patients with multimorbidity.”

Prof. Susanne S. Pedersen, Head of Department Susanne S. Pedersen, ESCAPE, and member of the TIMELY Advisory Board

How important is mental health in your project and how do you cover it?

We know that it is very important to deal not only with the underlying somatic diseases – like cardiovascular disease, diabetes. Mental health issues like anxiety and depression impact not only on patients’ health-related quality of life, adherence with medication, and lifestyle changes, but they also increase risk of morbidity (e.g., admission to hospital) and mortality. Hence, we need to screen patients for these psychological risk factors and treat them on an equal level as the underlying somatic diseases, including multimorbidity. Thus, the mental health of patients and treatment for anxiety and depression are included in ESCAPE. We measure it with the HADS, the Hospital Anxiety and Depression Scale, and then we also have a distress measure. That's basically the psychological aspect.

A key part of ESCAPE will be a randomised, controlled trial across European countries. What are your inclusion criteria?

We have 11 European sites. To be included in the study, patients have to be 65 years or older and they need to have heart failure and two other somatic comorbidities. You could say from the point of view that they had to have a mental health issue, they also had to have heart failure and on top of that at least two additional co-morbidities. So that was the choice that we made when setting up ESCAPE. And we decided to exclude a patient whose life expectancy was less than one year because of other limiting conditions as well as psychiatric disorders and suicidality.

We have a randomised controlled trial embedded in a comprehensive cohort study design. So that means that patients when they come in, they are asked “Do you want to participate in the RCT and if not would you be willing to participate in the cohort study?”. Some patients will say: “Well, I'm not interested in participating in the RCT.” “Well, are you interested that we just give you some questionnaires, and we follow you up over time?” That's maybe what is somewhat different compared to other trials. Those who end up in the cohort will simply get usual care.

How does the intervention look like? What do the patients get in the trial?

We are using the blended collaborative care model. We have one of the partners, she is living in the US partly and in Germany partly, and she has been involved in blended collaborative care trials in the US for patients with cardiovascular disease. So now we are trying to apply it to patients with multimorbidity.

Basically, there are trained care managers who work closely together with the patient’s general practitioner under supervision of a Clinical Specialist Team. We have standard operating procedures to ensure fidelity and that the intervention is being delivered as it was intended.

Is the care management in person or remote?

The care management in ESCAPE is in person and I know that – in this point - we differ very much from TIMELY. We are talking about patients being 65 and older and although the internet penetration rate is quite high (around 98%) in Denmark also among elderly patients, this is not necessarily the case for the other countries participating in ESCAPE. Hence, we deliberately chose this somewhat old-fashioned way, due to variation in digitalization and infrastructures across sites and countries, and the fact that we include elderly patients.

What is the care manager doing in ESCAPE, what is his or her task?

In ESCAPE, the nurse is kind of a care manager with access to specialists for consultations depending on patients’ challenges and comorbidities. The care manager has dialogues with patients in terms of what is going on, giving advice, and providing the intervention and referring to specialists. This is integrated care, meaning you have the specialties needed in the team or close by.

There's a lot of variation and a lot of elderly people also over the age of 65. They are well rehearsed in the Internet world, so it's not one-size-fits-all, but this is just what was decided and the reason why we don't use anything like you do in TIMELY.

You are part of our TIMELY Advisory Board. How do you deem the relevance of TIMELY for the management of elderly patients?

I think you've chosen a very good name, because I think it's timely actually that we contribute to the health care system and its many changes and challenges, for example with respect to innovation and digitalization. There's certainly a need.

That's also what we are discussing in my department – Department of Psychology at the University of Southern Denmark (SDU). At SDU, psychology is part of the Faculty of Health Sciences, as the only psychology department in Denmark. We are quite happy with that and see it as a clear advantage also because many of us also have a part time position in the university hospital, which is a fantastic synergy. We are currently discussing how we can get a platform for launching interventions (e.g., digital) for patients – both treatment and prevention – and also how we may be able to develop interventions for hospital staff as they are challenged at the moment. We don't have a platform like you have, and we would like to have a national platform. That’s what we are trying to work on at the moment, and whether we can pitch higher up and directly maybe to politicians: “Look, we actually have some research projects that can help the fact that the healthcare system is challenged”.

For example, we are running a clinical trial that will evaluate whether an internet-based and therapist-guided intervention targeting anxiety and depression in patients with ischemic heart disease will be helpful to patients. This is an online intervention, which is state-of-the-art in terms of modules that have been developed with the involvement of patients. This could be a nice add-on for the healthcare system because there's a lack of psychologists in the hospitals. When patients are referred to cardiac rehabilitation in Denmark, they are screened for anxiety and depression, but there is no treatment for their distress. They need to act on their screening result, by contacting e.g., their general practitioner (GP) but some of them “fall between two chairs” and never contact their GP. For example, if you are depressed and living alone, the risk is great that you will not contact your GP because of what you are dealing with is too overwhelming. We get the patients from the cardiac rehabilitation setting, and they are referred to us automatically, and we take over. I have also heard stories from some patients who went to their GP with their screening result which was positive and was told: “There's nothing wrong with you. You don't have depression.” So the patients are basically put down as well, if they even try. I hope it's the minority, but apparently it happens.

Hence, there is definitely a need for innovative solutions which focus not only on physical but also on mental health – and I´m glad that I can contribute to TIMELY with my expertise in this field.

ESCAPE has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 945377 (ESCAPE).

TIMELY has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 101017424.

This output reflects the views of the authors, and the European Commission is not responsible for any use that may be made of the information contained therein.