APH researcher and psychiatrist, professor Sandra Kooij has dedicated her career to bridging the gap between scientific discovery and clinical practice for adults with ADHD. In the 1990s, ADHD was mainly seen as a childhood disorder. Adults with symptoms were often misdiagnosed, misunderstood, and did not receive effective treatment. “At that time, ADHD in adults simply didn’t exist. Adults were given another diagnosis, such as a personality disorder, and were treated incorrectly,” Kooij explains. Thanks to her determination, care for this group of patients has been fundamentally transformed in the Netherlands and far beyond.
Breaking barriers across knowledge and age groups
Kooij’s journey began with a single patient diagnosed with borderline personality disorder, but she didn’t fit the standard picture. “I thought, this isn’t right, this isn’t it, but I don’t know what it is.” When she realized that ADHD could persist into adulthood, she developed new diagnostic tools, conducted pioneering research, and built networks of professionals and patients. “I created a diagnostic interview, the DIVA-5, which now exists in 3 versions and in 38 languages. The goal was to help the world better identify ADHD.” After succeeding in gaining recognition for ADHD in adults, she extended her research efforts to psychiatry for older adults as well. After showing ADHD also continued after age 60, it is now time for psychiatry for older adults to implement the new knowledge. “Patients shouldn’t have to hear twice in their lives that ADHD does not exist, because we have created barriers to knowledge and care by separating child, adult, and old-age psychiatry into different departments.”
A key aspect of Kooij’s approach is her unwavering focus on the needs of real patients. “I wasn’t looking for a quick win, but instead set a point on the horizon. I wanted to contribute to improving things for ADHD patients. That’s why you become a doctor and psychiatrist.” She collaborated with patient organizations, set up a specialized clinic, and followed her first patients for years to ensure safe and effective treatment. “In my first job, I had my own clinic with only ADHD-related questions. I learned a lot from that.”
Building sustainable knowledge and support
“I had many patients, and I felt it was irresponsible not to share that knowledge. Whenever an employee left, the knowledge left with them. I needed a team that would last longer than just someone’s job,” Kooij explains. This realization led her to move from GGZ Delfland to Parnassia Groep, where she succeeded in setting up a dedicated department and expertise center for adult ADHD because the leadership believed in her and trusted her vision. “I had a management team that supported me, and you absolutely need that if you want to create something new.”
Kooij’s motivation was rooted in the significance of the situation, and chaired the first Dutch guideline for ADHD in adults. She stresses the importance of collaboration, curiosity, and intrinsic motivation: “You can’t do it alone. You really need allies, people who believe in your idea. I was lucky to have that support both at Parnassia Groep as well as at Vumc from prof. Aartjan Beekman and Brenda Penninx, and currently prof. Arne Popma." Kooij's impact story is one of perseverance despite initial skepticism, and of building bridges between child and adult psychiatry, research and practice, and across international borders. "A colleague once gave me a tile saying: If an idea doesn’t seem bizarre, there’s no hope for it. There is some truth in there. Pioneering means forging new paths."
Women, ADHD and hormones
Kooij has also drawn attention to underdiagnosed groups, especially women. As she explains, “Women with ADHD have been underdiagnosed, diagnosed too late, not diagnosed, or misdiagnosed.” According to Kooij, their symptoms often look different from men’s and are frequently mistaken for anxiety or depression (alone).
She points out that hormonal changes, during the menstrual cycle, after childbirth, or in peri-menopause, can worsen ADHD symptoms. “Many women with undiagnosed ADHD and perimenopausal complaints struggle for years and cannot function well, without knowing why,” Kooij says. The good news, she notes, is that besides hormone therapy, stimulant medication can help, even during hormonal shifts. And this is especially important for women who have had breastcancer and can not use hormonal therapy. “The hypothesis that estrogen and dopamine can compensate for each other is becoming increasingly plausible: when estrogen drops, increasing dopamine with ADHD medication can reduce especially cognitive symptoms and improve daily life, even for women without ADHD.” Recent international research by Neill Epperson and de Jong et al. supports this approach.
Sharing knowledge
In addition to her work on diagnostics and treatment, Kooij is committed to connecting transdiagnostic knowledge about the interactions between brain, heart, and hormones, for example through the Head-Heart-Hormones Network (H3-netwerk). There is also an important new link between ADHD, connective tissue and the immune system, that is associated with many physical diseases in ADHD. Her book(s), the ADHD Powerbank (together with dr. Dora Wynchank, her ally and successor) and the DIVA Foundation offer further insights into her work. Her groundbreaking research, practical innovations, and dedication to sharing knowledge have made her an inspiration to colleagues and patients worldwide. On February 12, she will deliver her valedictory lecture at the VU, where she will share the latest insights on the immune system and ADHD, after which she will continue research with her team and see patients.
Advice for making impact
By connecting solid research with clinical practice and patient experience, Kooij has set a new standard for ADHD care worldwide. Her story is proof of the power of curiosity, collaboration, and intrinsic motivation to making a difference. Her advise for other researchers is:
Do’s:
- Build a network of supporters and collaborators
- Share your tools and knowledge openly
- Stay focused on real impact for patients
Don’ts:
- Don’t try to do everything alone
- Don’t lose sight of the patient’s perspective
- Don’t be discouraged by initial skepticism, pioneering means forging new paths