When it comes to rare urological conditions, there is strength in numbers.
That’s why leading surgeons at five of the region’s premier children’s hospitals have formed the Pediatric Urology Midwest Alliance (PUMA). PUMA gives urologists the opportunity to learn from each other in order to improve patient outcomes for the field’s most complicated and rare conditions, such as bladder exstrophy and posterior urethral valves.
PUMA strives to serve patients through three primary activities:
- Continuous surgical education via mentorship, coaching and regular training opportunities
- International missions and intensive surgical immersion experiences
- Collaborative research efforts and data analysis
Improving Patient Care for Complex Urological Conditions
Although many urologists have the experience required to safely and effectively treat rare conditions, the members of PUMA believe that getting more experience is always better. That’s why they travel to each other’s institutions to observe and mentor each other during complex operations.
Not only does this mean that children with rare urologic conditions may have multiple experts involved their surgery but also it means that these surgeons get to participate in far more of these challenging operations than they would on their own. Rather than taking part in just one or two bladder exstrophy operations per year, for example, many PUMA surgeons take part in more than a dozen. This helps increase their knowledge and comfort level working with patients who have rare conditions requiring difficult procedures — so that all patients get a more experienced surgeon for their complex care.
Deliberately founded as a small, regional group of urologists, member hospitals include:
- Ann & Robert H. Lurie Children’s Hospital of Chicago
- Cincinnati Children’s Hospital Medical Center
- Mayo Eugenio Litta Children’s Hospital
- Nationwide Children’s Hospital
- Riley Hospital for Children
Making Research More Meaningful
It’s hard for individual hospitals to make meaningful advancements in research and clinical care for certain rare pediatric urologic conditions — some of which affect less than 1 in every 50,000 births. By joining forces, PUMA physician-scientists at the five member hospitals can pool their data and study larger groups of patients. They can draw stronger conclusions and learn more about these rare conditions than they would be able to by working alone.
PUMA also holds biannual research meetings, during which they share the latest in their own work on rare urology conditions, talk about exciting new research underway and brainstorm ways to collaborate.
Two joint research initiatives currently underway include:
- A short- and long-term follow-up study to examine patient outcomes for bladder exstrophy
- A clinical algorithm that all five hospitals will use in the pre- and post-operative management of posterior urethral valves; once in use, PUMA can study whether it improves care and patient outcomes and share their findings with the broader urology community
Although PUMA started only a few years ago, they already have been actively collaborating and sharing their findings. Recent publications and presentations include:
- McLeod DJ, Szymanski K, Gong E, Granberg C, Reddy P, Sebastiao Y, Fuchs M, Gargollo P, Whittam B, VanderBrink BA; PUMA. Renal replacement therapy and intermittent catheterization risk in posterior urethral valves. Pediatrics. 2019 Mar;143(3).
- McLeod DJ, Szymanski K, Fuchs M, Gargollo P, Gong E, Granberg C, Reddy P, Sebastiao Y, Whittam B, VanderBrink B. Renal replacement therapy and clean intermittent catheterization in posterior urethral valves: A 20-year multi-institutional retrospective cohort study. Journal of Pediatrics. Feb 2019. [Epub ahead of print]
- Fuchs M, Ahmed M, Jayanthi V, Kennedy U, Rosoklija I, Strine A, Yerkes E, Gargollo P. Bladder and bowel management in cloacal exstrophy: A long-term multi-institutional retrospective cohort study. Society for Pediatric Urology Annual Meeting, 2019.
- Rehfuss A, Sebastião Y, Gong E, Granberg C, Reddy P, Szymanski K, VanderBrink B, Whittam B, McLeod DJ; PUMA. Vesicoureteral reflux in newborn boys with posterior urethral valves is associated with lower serum creatinine nadir in the first year of life, suggesting decreased baseline functional renal mass. Podium Presentation at the Society of Pediatric Urology Fall Congress. Scottsdale Arizona, 2019.
- McLeod DJ, Ching C, Becknell B, Reddy P, Granberg C, VanderBrink B, Whittam B, Gong E; PUMA. Collaboration and standardized management plans to optimize clinical care and research of posterior urethral valves. Poster presentation at the Clinical and Scientific Advances in Urinary Tract Infections Conference. Columbus Ohio, 2019.
- McLeod DJ, Rehfuss A, Ching C, Becknell B, Reddy P, Granberg C, VanderBrink B, Whittam B, Gong E; PUMA. Collaboration and standardized management plans to optimize clinical care and research of posterior urethral valves. Moderated Poster Presentation at the Society of Pediatric Urology Fall Congress. Scottsdale Arizona, 2019.
- McLeod D, Szymanski K, Fuchs M, Gargollo P, Gong E, Granberg C, Reddy P, Sebastiao Y, Whittam B, VanderBrink B. Renal replacement therapy and clean intermittent catheterization in posterior urethral valves: A 20-year multi-institutional retrospective cohort study. Society for Pediatric Urology Annual Meeting, 2018.
- Szymanski K, Whittam B, Fuchs M, Mcleod D, Rosoklija I, Strine A, VanderBrink B, Yerkes E, Gargollo P. How common are subsequent bladder neck procedures after injecting a failed bladder neck repair in classic bladder exstrophy: A multi-institutional retrospective cohort study. Society for Pediatric Urology Annual Meeting, 2018.
- McLeod D, VanderBrink B, Szymanski K, Fuchs M, Gargollo P, Granberg C, Whittam B, Reddy P, Gong EM. Inter-hospital management and outcome variation in posterior urethral valves; A call for care standardization. Society for Pediatric Urology Fall Congress, 2018.
- Szymanski KM, Fuchs M, Mcleod D, Rosoklija I, Strine AC, VanderBrink B, Whittam B, Yerkes E, Gargollo P; PUMA. Bladder augmentation, diversion and clean intermittent catheterization in classic bladder exstrophy: A 36-year multi-institutional retrospective cohort study. Society for Pediatric Urology Fall Congress, 2017.
Training the Experts of Tomorrow
Mentorship of rising urologists is at the heart of PUMA’s mission. The group is feverishly working to distribute its valuable knowledge and experience to all 35 surgeons in their five member hospitals, including fellows and young faculty. By thoughtfully training the incoming generation of surgeons, PUMA hopes to increase the caliber of care and accelerate the pace of research advancement in rare urological conditions for decades to come.
Younger surgeons are always brought in to observe or participate in challenging operations and are offered leadership opportunities in research and protocol development. It is the hope of PUMA leaders that their efforts and mentorship focus will directly impact patient outcomes, clinical standards of care and future therapeutic approaches.
Missions to Share World-Class Care
In addition to learning from each other to help patients in the Midwest, PUMA members take a yearly mission trip. There they perform as many operations for rare urologic conditions in one week as most surgeons perform in several years of practice. These missions benefit the host hospitals and their patients as well as PUMA members.
- By travelling to areas in need of extra expertise, PUMA surgeons can bring world-class care to places with strained resources or care access.
- Recent mission locations include the Indira Ghandhi Children’s Hospital in Bangalore, India, where the PUMA team collaborated with local urologists to complete 18 exstrophy-related surgeries in a single week.
- Mission trips allow PUMA experts and their hosts to share their knowledge via lectures, mentoring and demonstrations.
- PUMA mission trips give members additional exposure to techniques and approaches to complex surgeries via collaboration with surgeons from around the world, advancing their goal of continuous learning.
The Future of PUMA
The central focus of this small, regional group is to help patients with rare urologic conditions by helping its members be better collaborators, surgeons and scientists. That’s why they’re keeping things small until they are sure that their approach is fruitful, effective and sustainable. In addition to the practical perks of keeping things close-knit — such as easier regional travel among hospitals to observe operations — the founding members believe that the group’s structure and outputs should be thoroughly vetted and evaluated before opening to new member institutions.
In time, PUMA membership may grow to include additional hospitals. As they make headway with bladder exstrophy and posterior urethral valve work, the group may also expand their focus to other rare urologic conditions and complicated surgical procedures.PUMA leaders hope that the model they’ve developed will succeed and eventually inspire other hospitals and regions to develop similar collaboratives to advance research and train the next generation of surgical leaders. In addition, they expect the increased experience of their physicians, along with their protocols and research findings, will improve outcomes for patients with rare urologic conditions — in the Midwest and beyond.