Interview with patient participant: Karin Stratingh

What is truly important to 'the patient'?

Faster Detection and Treatment of Rheumatism - The Patient Journey of Karin Stratingh

ReumaNederland is increasingly collaborating with people with lived experiences, especially in the research we fund. What is truly important to 'the patient'? Are researchers speaking the right language? A great example of this rather unique collaboration is the story of Karin Stratingh. This 25-year-old student with RA (Rheumatoid Arthritis) was paired with our SPIDeRR project. We’d love to tell you more about the research and the importance of patient participation. 

 

Was I just tired? Overworked?

 “I had just started my medical studies in Groningen. As a side job, I worked at a bakery. Studying and working was sometimes tough, but otherwise, I felt good. I had always been healthy during my youth,” Karin recalls. But suddenly, the student started experiencing vague pain in her joints. “It happened in attacks; the pain would come and then disappear again. Was I just tired? Overworked? I did visit the general practitioner during that period, but they saw no reason to refer me at that time. I think I continued for another six months. Until suddenly, I was in so much pain and my hands became swollen, that I went back to the doctor.”

 

Then everything happened quickly. A visit to the rheumatologist, various tests, and finally the diagnosis: Rheumatoid Arthritis. Karin was 21 years old at the time.

 

Give me three months

“Yes, I knew the disease. My mother also has RA, so I had a rough idea of what it meant. Still, I couldn’t foresee the full impact. My mother was much older when she received her diagnosis. I remember being very optimistic at the bakery, saying: give me three months, and I’ll be back,” she says. 

Unfortunately, that wasn’t the case. What followed was a tough and uncertain period. “It took about two years to find medication that worked well. Like everyone with this diagnosis, I started with the classic rheumatoid arthritis medications, including methotrexate. That wasn’t enough, and the side effects were unpleasant. I then tried several biologics and JAK inhibitors. Sometimes I had to take injections, and other times infusions. Only after two years did the disease calm down, and I started feeling better. I now use…”

The Importance of Project SPIDeRR

Karin Stratingh's story beautifully, yet painfully, highlights the importance of the SPIDeRR project, which she is now involved in as a patient expert.

SPIDeRR is a European Union-funded research program aimed at improving the detection and treatment of rheumatic diseases. The project's goal is to develop automated tools for healthcare that prevent people from running in circles for too long before receiving a diagnosis and the right treatment.

Karin knows better than anyone what those circles look like and where the pain points and needs lie.

Unnecessary Delays in Diagnosis

Karin's story is not unique. Delays in diagnosis and treatment are unfortunately very common for people with joint and muscle complaints. For a disease like Rheumatoid Arthritis, patients typically start treatment on average 12 months after their initial symptoms. However, we know that starting treatment within three months leads to a more favorable disease course. For Spondyloarthritis, this delay can extend to about three years, and in the case of Fibromyalgia, it’s even longer—six years or more.

 
For a general practitioner, it’s difficult to recognize all the different types of rheumatic diseases immediately. There are quite a few forms, and treatments for them vary significantly. Moreover, not all available treatments work immediately for every patient.

The So-Called Patient Journey

“SPIDeRR focuses on this so-called patient journey,” explains Karin. “In other words, it’s about the route people take before and after the diagnosis.
When do people go to the GP? What symptoms do they have at that point? How long do they wait to seek help? And what have they done themselves up to that point? Do they first visit a physiotherapist? What healthcare professionals do they encounter along their ‘journey’? Does this differ from person to person, and why? Is it only related to symptoms? Does the healthcare system of a particular country also play a role? How often do patients see a rheumatologist? And what happens after the diagnosis? What medications are prescribed?”

Creating Questionnaires

In addition to the available healthcare data, new questionnaires are being developed to gather information.
Karin plays an important role in this as a patient expert. “Blood values and other hard clinical outcomes are, of course, important. But as a patient, you often place more value on things like quality of life. I find it just as important to ask how people experience the entire process; the mental aspect. It’s good that this is also being addressed.”

To map out the patient journey, a vast amount of data is now being collected. The next step is to improve the process using this data. For this, clinical models or tools will be developed, utilizing modern technologies such as data science and machine learning (a form of artificial intelligence, AI). After all, we are dealing with huge amounts of data and experiences.

Time is Damage
Looking back, Karin regrets that quite some time was lost in diagnosing her condition. Because time means damage. But it’s also understandable, she reflects.

“I think it’s natural that people don’t immediately visit the GP for a vague pain. It’s also understandable that rheumatism, among all the complaints related to the musculoskeletal system, is the proverbial needle in a haystack for general practitioners. It’s certainly not a solution to refer everyone with knee or foot pain directly to a rheumatologist. Some people might find the right place immediately, but for many others, it could actually delay the correct diagnosis. But all these factors contribute to the delay,” says Karin.

Getting Patients to the Right Place Faster

She hopes that the clinical models or tools currently being developed in the SPIDeRR project will eventually help patients get to the right place faster, leading to earlier diagnoses. Moreover, she hopes this will lead to more targeted medication. “This not only prevents a lot of confusion and uncertainty, but also avoids unnecessary health damage and healthcare costs.”

The researchers also emphasize that these tools will hopefully help reassure people with pain who do not have rheumatism. This too can prevent a lot of uncertainty and reduce healthcare costs.

Master’s Degree
Due to her illness, Karin ultimately chose not to become a doctor or specialist herself. After completing her bachelor's in medicine, she is now pursuing a master’s degree in Health, Aging, and Society in Leiden. “This focuses on healthy aging; on care, research, and policy. I think it suits me very well.”
She continues: “My disease is now under control. That means the inflammation is managed. But that doesn’t mean I have no symptoms. My hands and feet feel painful in the morning. My energy levels are often just low. I find that particularly difficult. And you constantly have to explain that to your surroundings. People, of course, don’t see anything wrong with you. And they think ‘there’s medication, right?’”

Misconceptions
Rheumatic diseases and musculoskeletal disorders are still underestimated despite their immense impact, both by healthcare professionals and the general public. In short, there’s still a lot of misunderstanding surrounding these conditions. I hope that with my story and my contribution to this research, I can help change that.”