Surgery of adults with OI – Dr. Guus Janus
Interview with Dr. Guus Janus, ISALA Treatment Center Zwolle, The Netherlands

In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are the pros and cons of having OI-specialists, who can also operate adults? We asked three very experienced OI-surgeons for their opinion on this. Second one out is dr. Guus Janus from the Netherlands.
Who are you and what is your relationship to OI?
I’m Guus Janus (left side of the photo), orthopedic surgeon who have been working with people with OI since my internship. At the start I was astonished by the vulnerability of the bones, but also by the possibilities and impossibilities of surgical procedures in OI. As my interest in the disease and people grew, I started my PhD with the title “Osteogenesis Imperfecta. Orthopaedic and Fundamental aspects”.
I’m working at Isala Zwolle in the Netherlands, which is a large training hospital. Since I have been working quite a long time in Isala, I suppose I’ve operated more than hundreds of adult people with OI, from 18 years and older, with several complaints: Trauma, post-trauma abnormalities, deformity correction and arthritic joints. The last decade I preferably operate together with a colleague – orthopedic surgeon – to further improve quality. As often as possible, we implemented the same team for an operation of people with OI, to ensure the best possible care during and after the operation.
Do you sometimes refer to another adult specialist because of the type of surgery?
No. As an adult OI specialist I will accomplish all surgical procedures. An exception is foot surgery, a very experienced orthopedic foot-surgeon operates our patients, however sometimes with my assistance. All other procedures will be performed by me regularly and preferably together with one of my colleagues.
What are the pros and cons of having OI-specialists who can also operate adults?
An orthopedic surgeon with interest and experience in treating people with OI has an enormous added value. The decision process starts at the outpatient clinic and in consultation with the patient expectations about an operation are discussed. And it is precisely the knowledge and experience with OI that increases the quality of the procedure. Or sometimes it is wiser not to perform an intervention! An OI-specialist realizes the limitations and vulnerabilities of the bone and soft tissues in people with OI and can act accordingly.
Should we advocate for having more pediatric surgeons doing surgery on adults with OI?
I cannot judge about other health systems in other countries, but in the Netherlands the system with a very strict separation between children and adults works. Arjan Harsevoort, Nurse Practitioner and affiliated with our expertise center, attends two times a year the transition outpatient clinic at the WKZ, Utrecht, to coach the 17 and 18 years old ones to an adult expertise center.
Should it be a collaboration between a pediatric OI-surgeon and an adult specialized surgeon?
From my point of view also the adult benefits the most from a specialized orthopedic surgeon in OI and a dedicated team around the patient. I think OIFE and national patient organizations could play a role in this development, as well as pediatric OI-specialists.
Anything to add?
As an operation is serious business, it is not only the performing surgeon but also the OI-team of specialized doctors and paramedics which raises quality to a higher level. The ultimate success of a procedure is not only indication but also rehabilitation.
Check out the interviews with Dr. Jeanne Franzone from the USA and Dr. Michael To from Hong Kong.
Editorial note:
Guus Janus was one of the authors behind the ROADMAP TO SURGERY. This is a roadmap for a standardized, integrated approach for optimal outcomes of surgery in OI, not only from a surgical view, but also from the patient’s perspective, that can be used in all infrastructures and cultures. The article is open access and can be found here.