Interview with Ruth van Nispen. As of the 1st of June 2021, Ruth has been appointed professor of ‘Visual Functioning & Health’ at the Department of Ophthalmology of Amsterdam UMC. This new permanent academic position is associated with the Amsterdam Public Health research institute and the Free University of Amsterdam. The creation of this new position acknowledges the need for much needed attention on the impact that a visual impairment has on the overall health and functioning in daily life and society. For over 15 years, Ruth has been contributing to improving the quality of life, mental well-being, and participation of this target group. You can find more information about the research and treatments here: https://lowvisionresearchamsterdam.com

Could you introduce yourself to us?

I am 49 years old and grew in in Vlissingen, Zeeland. Thirty years ago, I moved to Amsterdam to study psychology. There were very few jobs in social work, but an internship at the Antonie van Leeuwenhoek hospital got me hooked on doing scientific research. You may be more at a distance and not directly helping people in t

he field, but you may be able to discover things on a larger scale which indirectly helps a larger group of people. That’s what the true appeal of doing research was for me.

What did you do after your studies?

After my studies, I worked at Nivel for a few years. It is a research institute in Utrecht that conducts research into general healthcare. One of the things I did research on were people with rare diseases. It included research into the quality of life of this focus group in comparison to people with more common diseases. If you are doing research and you want to make progress, at some point it is a good idea to study for a PhD. In 2005 I found a PhD position at the VU Medical Centre in Amsterdam. I ended up in the ophthalmology department with ophthalmologist Ger van Rens, professor of visual rehabilitation.

There I spent four years doing research on the effects of rehabilitation of people with visual impairments. I also did a lot of work on questionnaire development to be able to reliably find out what is going on with people.

At the time I also found out that depressive symptoms occur in about one in three people who are partially sighted. This was also mentioned in the literature, but I saw it confirmed in my own research.

I then devised a study to see how these depressive symptoms could be prevented from developing into a real clinical depression. After all, mild complaints increase the risk of developing a depressive disorder. One of the first follow-up studies that I did with my PhD student Hilde van der Aa was into the cost-effectiveness of a treatment that prevents people from developing a disorder. The treatment turned out to be highly effective in reducing complaints and preventing disorders.

What other subjects are you researching?

In the meantime, all kinds of other questions came in from various groups of visually impaired people; especially through Royal Visio and Bartiméus. I have addressed these research questions as much as possible, applied for grants, and now I have quite a large group of people conducting research on various topics relating to visual impairment. For example, we are conducting research into fatigue, another common problem.

I also do research that is more in the direction of clinical research. For instance, I am currently conducting a major study on the effects of corneal transplants. In particular, the effect of the disease and surgery on the quality of life and participation of patients. In other words, can you continue to work, take part in society, and what about your mental health? After a cornea transplant, patients can continue to suffer from pain, dry eyes, and discomfort from light, this can make it physically difficult to continue to do certain things.

Can you tell us something about your professorship?

Presently, I have made a career in my department and have become a professor. As a professor, Ger van Rens held a special position for 20 years on behalf of the General Society for the Prevention of Blindness and then on behalf of Royal Visio. The Robert Coppes Foundation was interested in linking our department and me through a special professorship. They wanted more attention for research into people who, in addition to a visual disability, also have other disabilities, such as psychiatric problems.

The Vrije Universiteit (Free University) in Amsterdam thought that, after having had a special position for 20 years, it was time for a permanent position. That is fantastic, because it is an enormous recognition for the target group of people with visual impairments. The VU considers this topic to be so important, both scientifically and socially, that they want it to be given permanent attention, so to speak. We have had a close collaboration with the Robert Coppes Foundation for a long time, so the research for their specific target group has become an important part of my line of research.

What is your drive, what makes your job fun?

Helping people. Ultimately, with this research I want to achieve that people experience less misery from the limitations they have, and so truly improve their quality of life.

What makes me happy is that we have developed a treatment for depressive symptoms. We have been able to calculate how many people have genuinely improved compared to people who did not receive the treatment. We are now doing the same with the treatment for fatigue related complaints.

We devise such a treatment together with other scientists and have adapted it for people with visual impairments. Experts by experience, i.e., people with a visual impairment, also are part of our design team. We are now testing this treatment in a large study to see if people really benefit from it. I think it is very cool to be able to test your research and see that people are experiencing direct results. For some, this means that they can pick up their hobbies again and for others that they can go back to work. And that they can take part in society again and that you don’t have to sit in a corner because your vision is impaired.

How can we access the treatment for sombreness and depression?

The stepped care treatment for the elderly (50+) with somberness or depression can be taken via the Robert Coppes Foundation, but also Royal Visio and Bartiméus have this and other treatments. 

More information: https://www.visio.org/nl-nl/home/actueel/nieuws/2021/januari-2021/behandeling-somberheid-ouderen-visueel or https://www.bartimeus.nl/specialistische-kennis/verlies-van-zicht-een-levend-verlies.

What are you currently working on?

Many different projects. We are still developing Patient Reported Outcome Measures (PROMs). For example, one project is aimed at people with macular degeneration, in which one can get haemorrhages in the retina, which can nowadays be treated with injections that reduce the haemorrhages. The questionnaire for these patients is about quality of life, but also about how you deal with it in daily life. So how do you cope with reading, driving a car, shopping independently. That sort of thing.

The idea is that the PROM reflects the patient’s perspective as well as the ophthalmologist’s perspective, which is about treatment. The ophthalmologist knows how things are going clinically, because each time the vision is measured, but the ophthalmologist does not know how things are going practically at home.

Through the PROM questionnaires, the ophthalmologist can get a better idea of this and, if necessary, call in extra help. This improves the care a little.

Other projects deal with depression and anxiety because they are and will continue to be important themes. For instance, there is fear of going out on the street or fear of going blind, so we are researching the psychosocial aspect of a visual impairment.

In the field of public health, we have a large study on eye screening in home care. This is mainly about the elderly because severe visual impairment is most common in the elderly. It is often age-related eye diseases that cause permanent visual impairment, such as macular degeneration, glaucoma and diabetic retinopathy.

It is known that many people in nursing homes are severely visually impaired, but this is much less well known among the elderly who still live at home with home care. Since people are living at home for longer periods of time, we thought of working with nurses to see how the eyes of these elderly people are doing. There is not much attention for this yet, while many health problems arise from this. Depressive symptoms, and an increased risk of falls and bone fractures, such as hip fractures, are a few examples of this.

A vastly different research project that I have become involved in, are some studies on biomarkers in the eye related to Alzheimer’s disease. We are investigating whether we can detect Alzheimer’s at an early stage by conducting different types of scans of the retina at the back of the eye.

What other types of research is conducted at the ophthalmology department of Amsterdam UMC?

In my line of research, I am mainly concerned with the impact of visual impairment on daily life and quality of life. But we also have research going on in the field of macular degeneration (Prof. Schlingemann), the heredity of eye disorders (Prof. Camiel Boon and Prof. Arthur Bergen), retinoblastoma, a rare eye cancer in small children (Prof. Annette Moll) and in the field of orbital surgery (Prof. Saeed), which involves the eye socket and problems caused by Graves’ disease, for example.

The merger of the AMC and VUmc sites into Amsterdam UMC has enabled us to bring together some exceptionally good areas of research. We do a lot of fundamental work from the laboratory, clinical research (into the effectiveness of medication and gene therapy) and I mainly do applied research (practice-oriented and focused on the impact on people’s lives).

Apart from my own research, one of my tasks as a professor is to publicise the fact that our Amsterdam Eye Centre conducts high-quality scientific research from the laboratory bench to the kitchen table.

Were you familiar with ADOA and ADOA plus?

No, I did not know it. I have seen a lot of rare diseases in recent years, but not this particular one. Of course, I am familiar with the phenomenon of opticus atrophy, but I did not know that it had a specific dominant inheritance.

Do you have any tips for people with ADOA or ADOA plus?

Although it is not a tip, we have a large study underway together with Visio Het Loo Erf that also deals with people who have both a visual and a hearing problem. A well-known example is Usher’s disease. We want to look at how these two senses work together and compensate each other when one or both becomes impaired. We look at the tipping points, when does the degree of vision loss and/or hearing loss affect mobility, information processing, communication and energy balance. People don’t seem to notice this compensation mechanism themselves. We discovered this by asking people who have this joint impairment. It turns out that people find it exceedingly difficult to describe how compensation works. Hopefully, we will soon be able to measure this and find leads as to how we can advise people specifically with aids or training. This research is perhaps relevant to your target group given the hearing impairment that can also occur with ADOA.