Looking Back…Moving Forward: A Focus on Hydrocephalus Research

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John KestleAs we continue our interview series in commemoration of our 30th anniversary, we sit down with Dr. John Kestle, Head of the Department of Surgery at The University of British Columbia in Vancouver, Canada. Dr. Kestle is also a member of our Board of Directors, our Medical Advisory Board (MAB), and a founding member of the Hydrocephalus Clinical Research Network (HCRN). Dr. Kestle shares his thoughts on the current state of hydrocephalus research, founding the HCRN, and his reflections on the Hydrocephalus Association.

HA: What was your first interaction with HA and what was your first impression?

DR. KESTLE: I met Emily Fudge years ago at a neurosurgical conference. I had just moved to Utah from Vancouver, Canada. She struck me as someone who is very kind but persistent. She was very effective at getting things done. I found HA to be a thoughtful, caring group trying to improve things for the patient population. When Emily asked me to be on the Medical Advisory Board (MAB), I was happy to join because I thought I could do some good for the patients and that it was important to help. I also felt it was a good way to get to know other people in this field, since I had recently moved to the U.S.

HA: You take a particular interest in research and play an active role with HA and our research initiatives. Can you tell our readers a little about this?

DR. KESTLE: I have a degree in how to run clinical trials. As neurosurgeons, hydrocephalus is the most common thing we do. When I started practicing neurosurgery, there were all these new valves coming out. Working with Jim Drake in Toronto, we saw the opportunity to do clinical trials and we began by testing the valves on the market at that time.

HA: So why did you choose to go into pediatric neurosurgery?

DR. KESTLE: When you’re studying medicine, you try all the different fields. I liked all of neurosurgery but I enjoyed pediatric neurosurgery the most. Kids just want to get better and go home. I perform about 250 operations every year and about 40% of those are hydrocephalus-related.

HA: That is a large part of your practice. We’ve heard from our young adult community that it is hard to transition to adult-care. That neurosurgeons are sometimes reluctant to take on these individuals as new patients. Many pediatric neurosurgeons continue to treat their patients into adulthood. Why is that?

DR. KESTLE: We are now seeing all kinds of pediatric conditions surviving into adulthood. As a general rule, it is more difficult to take over the care of someone who’s had previous care by another physician. This is not just in the transition from pediatric to adult care but within the general patient population. In neurosurgery (especially in hydrocephalus), these are patients who have had repeated operations over the years. It’s easier for a surgeon to start fresh. Also adult practitioners have limited exposure to pediatric conditions so they become less comfortable managing them. The other unfortunate problem in the current U.S. system that is a barrier to care is that a lot of the children growing into adults have gone through repeated treatments and come to care with no insurance or on Medicaid.

HA: You are one of the founding members of the Hydrocephalus Clinical Research Network (HCRN). How did it form?

DR. KESTLE: There was a consensus conference on hydrocephalus and we were discussing the need for clinical studies and realizing we weren’t going to get anywhere without a network. Paul Gross was at the meeting. Afterwards he called me and we got together to look at a number of different research ideas for hydrocephalus. In the end, we liked the idea of a network and we founded HCRN. Although HCRN and HA are separate entities, we started a collaborative arrangement in 2012, in which HA provides a portion of HCRN’s funding.

HA: Apart from the funding commitment, what does HA bring to the HCRN?

DR. KESTLE: HA brings attention to HCRN and helps promote our activity. In addition we get valuable input from HA members. We shouldn’t be doing research in a vacuum. HCRN wants to do research that is important to children and their families and we are able to get feedback from the patient population through HA.

HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?

DR. KESTLE: Research funding. The whole package that HA offers is important – advocacy to raise awareness, education for members – but through HA’s research initiatives and funding, HA has brought researchers together. This is important. Everyone was off in their corners doing their own thing. People have now come together and exchanged ideas. It’s made a more cohesive research community.

HA: What message do you have for individuals living with hydrocephalus?

DR. KESTLE: Research activity is at its highest level ever. There’s no magic bullet but we’re making steady progress and there are a lot of people that care a lot about where we’re going and what we’re doing. We’re working hard to find better treatment options and a cure on your behalf.

HA: Where would you like to see HA 5 years from now?

DR. KESTLE: Hydrocephalus is as common as cystic fibrosis. There are 1 in 1000 babies that need support. Hydrocephalus research is not nearly supported to the extent of other comparable conditions. It would be nice if HA was in a position to hold regular grant competitions, including clinical trials.

HA: Where would you like to see the HCRN 5 years from now?

DR. KESTLE: I would like to see HCRN funded by more peer reviewed grants. If we can do that, it will demonstrate that we are doing good work. Our funding has been partially from peer reviewed grants but we have been fortunate enough to receive philanthropic support as well. Both will likely always be important as we grow.

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