VCUG tests are widely performed on hundreds of thousands of children every year, sometimes unnecessarily. Despite decades-old research establishing that many kids experience VCUG as child sexual abuse (CSA)—a fact supported by an abundance of compelling evidence—the long-term risks of VCUG are rarely disclosed to parents before the test is ordered.
From the pediatric provider ordering the VCUG test to the child life specialists assigned to the exam room to the radiologic techs performing the procedure, children undergo various checkpoints with various parties long before the VCUG is actually performed.
This begs the question: Who is responsible for disclosing the risks of VCUG? Better yet, who bears the responsibility of obtaining legally effective informed consent from parents prior to their child’s procedure?
In this blog, we’ll review the various checkpoints kids undergo before being physically restrained on the exam table for painful, involuntary catheterization, often without a parent present in the room.
Medical Personnel Involved in VCUG Testing
While the VCUG test is the so-called “gold standard” to diagnose kidney reflux (VUR) in kids, research highlights an alarming lack of disclosure regarding the well-documented health effects and lasting psychological harm this procedure has inflicted on generations of kids.
As we continue to fight for a standardized protocol and VCUG reform in pediatric urology, we must also establish the obligations of the various medical parties involved to ensure parents receive all necessary information to make informed decisions for their child’s medical care and well-being.
The truth is that various parties are responsible for facilitating the VCUG test. More importantly, each group has their own unique role and “blind spots” when it comes to this procedure. Below, we break down the primary parties involved in pediatric VCUGs:
The referring physician who orders the test.
The healthcare administrators managing patient intake at the hospital or radiology clinic.
The nurses and radiology techs assisting with exam preparation.
The radiologist, who are responsible for performing, recording, and deciphering the VCUG test results.
“Heightened awareness about the radiation risks […] has motivated efforts to reduce radiation dose and eliminate unnecessary imaging,” says a 2016 journal published by The British Journal of Radiology. “However, many ordering providers […] are ill-prepared to have an informed discussion with patients about the cancer risks related to medical imaging.”
As we'll learn in the following sections, this isn't limited to ordering providers. For the most part, every medical professional on the path to VCUG trauma—often through no fault of their own—lacks the time and resources to review VCUG risks with families, let alone invite and address parental questions and concerns before the test is performed.
Having the opportunity to voice questions/concerns about a proposed treatment in a safe and mutually respectful professional environment is a right that every family is entitled to. Taking adequate time to address parental and patient concerns regarding VCUG is the responsibility of all medical professionals involved in the process.
Young and vulnerable pediatric patient cohort aside, broader patient surveys reflect concerns from patients of all ages regarding risk disclosure for diagnostic imaging. Surveys of patients and providers have demonstrated that patients “have a poor understanding of the risks” and “desire to be informed about the radiation risks of imaging, but are often not told about these risks” (Shyu & Sodickson, 2016).
As you can imagine, the stakes are significantly higher for parents who are simply trying to act in the best interests of their child. At the Unsilenced Movement, we strongly believe that waiting until the day of the VCUG procedure is far too late to inform families of the risks involved. As former VCUG patients, we aim to give a voice to the kids we once were by ensuring families aren’t left in the dark.
Disclaimer: Research reveals that VCUG protocol “varies widely” among institutions and practices. We acknowledge that not every VCUG test will follow the steps below. We did our best to highlight the experience that the majority of families have during the VCUG process.
Part 1: Pediatric Providers
The first party to initiate the VCUG test is your child’s pediatric provider or urologist. Their role is to understand and recognize the symptomology of vesicoureteral reflux (VUR) in pediatric patients, and refer children with clinical indications for voiding cystourethrography. However, the criteria for VCUG referrals vary widely from practice to practice, swayed by factors like experience levels, geographic location, state-specific laws, and other influences.
For example, while a pediatric urologist may possess specialized training and experience to accurately identify patients with VUR, a general family doctor or more inexperienced provider may lack specialized knowledge of VUR and VCUG to refer children appropriately—that is, in situations where the benefits of diagnostic testing outweigh the cons. This is especially true given the blurred lines of VCUG protocol, which affects everything from VCUG referral to performance to follow-up care.
Why Treating Physicians Order VCUG Tests
Recurring urinary tract infections (UTIs) are the #1 indication of kidney reflux in kids. Given that UTIs in children can stem from a wide variety of causes apart from VUR, there’s a high likelihood that many children undergo VCUG without medical necessity due to referrals from well-meaning pediatric providers.
“Most children will have uncomplicated UTIs, because they most commonly are caused by abnormal urination patterns and infrequent urination,” says Yale Medicine. “A smaller percentage of children will have vesicoureteral reflux or some other anatomic abnormality that may require surgical intervention.”
“UTIs are common in kids,” says another article by Children’s Healthcare of Atlanta. “The exact numbers vary depending on age and gender, but around eight out of 100 girls and two out of 100 boys will get a UTI [prior to age 5].”
Common Causes of UTIs in Children
While this rate may seem low, it’s worth noting that kids develop UTIs for a constellation of reasons, especially during toilet-training. Common reasons for UTIs unrelated to VUR include:
Infrequent diaper changes: Putting off diaper changes can increase a child’s risk of developing UTIs.
Poor wiping habits: Children are more prone to UTIs during potty-training, when they’re still learning how to wipe properly.
Delaying urination: While this can affect children of any age, it’s especially common in schoolchildren who are learning to hold their bladder while in class or at play.
Dehydration: Urinating frequently and completely is important to prevent infections. Staying hydrated dilutes urine and makes children urinate more often, reducing the risk of UTIs.
The importance of doing your due diligence before consenting to your child’s VCUG cannot be overstated. There are various reasons why your child may develop a UTI—and as you can see above, urinary tract abnormalities are simply one of several.
This isn’t to say that pediatric providers are doing a poor job. In the vast majority of cases, pediatric providers are doing the best they can with the information they’re given. Of course, this (again) underscores the importance of understanding the roles of all medical professionals involved in VCUGs.
Because hospitals promote VCUG as the safe, routine, and low-risk “gold standard,” a medically unnecessary VCUG may not seem like a big deal. However, to the children who experience this procedure as a “violent rape” (Azarfar et al., 2016), the severe psychological trauma is forever life-altering.
While providers may wish to inform patients and parents of VCUG risks, they “may not feel comfortable having these discussions” due to their unfamiliarity with specific radiologic protocols (Shyu & Sodickson, 2016).
This is clearly highlighted in the 2006 AUA panel featuring Dr. Avrum Pollock (moderator), Dr. David Diamond (pediatric urologist at Harvard Medical School) and Dr. John T. Boyle (Chief of Pediatric Gastroenterology at the University of Alabama at Birmingham).
Dr. Pollock asks, “In ordering a procedure, do you feel that it is your obligation to discuss with the parents what the procedure involves in terms of catheterization, potential pain, radiation exposure, etc., or do you then relegate that responsibility to the radiology personnel?”
Dr. Diamond responds, “I have never as a routine gone into the radiologic details, because there are limited times in the day for me to see the patients that I need to see…Given the number of studies that we order throughout the day, there is not time to go over real issues with the parents. I think it is proper that someone do it, but it is not workable for us to do it.” (Emphasis added.)
While it’s true that medical personnel are primarily compensated for quantity of care versus quality of care, this statement raises serious concerns. If it isn’t “workable” for pediatric providers to discuss the VCUG test “in detail” with families, then who bears the critical responsibility of reviewing VCUG risks, alternatives, resources, and follow-up care, including psychotherapy referrals and mental health treatment?
But the treating physician is just the first of many “checkpoints” on the path to VCUG. Next, we’ll examine the role of hospital and radiology staff on the day of your child’s VCUG test.
Part 2: Hospitals & Radiology Clinics
On the day of the VCUG test, non-clinical staff at the hospital or radiology clinic will assist you with patient intake forms, billing, and other required paperwork. The role of non-clinical workers at healthcare institutions are heavily administrative, leaving little room to address testing concerns, discuss VCUG risks in detail, or review the procedural steps involved.
This should come as no surprise: In the hustle-and-bustle of the profit-driven machine we call American healthcare, the ability of non-clinical staff to properly prepare families for what happens in the VCUG testing room is understandably limited.
Aside from what’s on script—e.g., the standard spiel and administrative duties that professionals are trained to deliver—these workers are unlikely to possess the necessary time, training, and nuanced understanding of pediatric urology to educate families about their child’s VCUG.
However, this means that the role of obtaining informed consent by disclosing all pertinent information about voiding cystourethrogram falls on someone else’s shoulders further down the road to VCUG—and the list of candidates is already wearing thin.
Next, we’ll explore the role of the child life specialist during your child’s VCUG.
Part 3: Child Life Specialists
Unlike other medical personnel, the role of the child life specialist is centered on supporting the family unit as a whole. While they may sound like the perfect candidate to prepare families for VCUG, not every hospital has child life specialists on staff. Even if there are child life specialists available, many professionals in this role attest to a lack of preparation and training to fulfill their role in the VCUG exam room.
What Is the Role of a Child Life Specialist?
According to the Mayo Clinic, child life specialists are responsible for:
Supporting children and their families to help them better understand a process, procedure, or other element of their medical experience.
Developing age-appropriate strategies to minimize trauma using therapeutic play and activities.
Helping children and their families process and cope with medical situations.
Providing information, support, and guidance to parents and family members.
Collaborating with the health care team to coordinate and manage care.
It’s worth noting that the educational requirements for this position, while appropriate, does not compare to the high requirements for other medical personnel in the exam room. Requirements for child life specialists generally include a Bachelor’s degree. Moreover, “[w]ork for a child life specialist changes daily and allows for a lot of creativity in developing coping plans. Child life specialists are different from many other health care providers as they focus on the psychosocial needs of the patient.” (Emphasis added.)
This isn’t to say that child life specialists aren’t an invaluable and integral part of the healthcare system. It simply means that they are far less likely to possess any specialized knowledge of the VCUG procedure that may influence parental decisions before and during the exam. This includes critical information that families need and deserve to give informed consent, including:
The option of safe, available alternatives to VCUG, including no treatment.
The medical necessity of VCUG for the patient.
A comprehensive understanding of VCUG risks, including severe psychological trauma persisting well into adulthood.
Research shows that parental presence and reassurance during the VCUG test does very little to comfort patients. In fact, many former patients attest that receiving comfort from adults in the exam room makes their experience significantly worse.
On the day of her test, one former patient remembers “a young, pretty woman” holding a teddy bear. “The woman explained to me what I was about to experience, taking a small tube and covering the bear's genital area with it. She stated this is what the doctors were going to do with me, and that it might feel a little uncomfortable. I had no idea how misleading that statement was.”
As former patients, we acknowledge that child life specialists play an invaluable role in many medical settings, greatly benefitting the well-being of patients and parents alike. However, the VCUG test is no ordinary procedure. Critically appraised research and patient testimonies overwhelmingly support that offering emotional comfort to children undergoing VCUG is fruitless—and that certainly isn’t the child life specialist’s fault.
The reality is that the majority of VCUG patients are inconsolable during the exam. And why wouldn’t they be? When children perceive what’s happening as “violent” sexual abuse at the hands of trusted adults and family members, it’s no wonder that the child life specialist’s role is a forgettable part of the VCUG experience for so many patients.
Even with top-tier training in child development, education, and psychology, child life specialists are limited in their ability to advocate for VCUG patients. While they may offer support throughout the procedure, they also aren’t going to stop the VCUG—even when children demonstrate signs of extreme psychological distress.
While child life specialists may be a kind face in the room, their faces are quickly forgotten when the test begins. Offering comfort to a naked child while witnessing the patient being tied down on the table and forcibly penetrated against their will is the equivalent of holding a rape victim’s hand as they endure excruciating, foreign pain they are powerless to stop.
In an ideal world where child life specialists could provide compassionate care in advance of VCUG test day, their role and expertise would likely be significantly more fulfilling and beneficial for everyone involved.
Part 4: Radiologic Technologists
During VCUG, radiologic technologists are arguably the least equipped to discuss the VCUG test with families. In addition to working tight schedules and long hours, these personnel undergo rigorous training in adherence to the “fee-for-service” case model—the resource-based relative value scale (RBRVS) used by Medicare, which compensates healthcare providers separately for each service rendered.
This “fee-for-service” connotes remuneration based directly on units of work performed, meaning payment is dependent on the quantity of care, such as the number of patients seen or examinations read. This is the most frequently used reimbursement method for professional services in the current U.S. marketplace.
Radiologic techs are arguably the most hands-on during VCUG. They’re responsible for performing what many patients perceive as the most traumatic features of the test, as denoted in this kid-friendly “VCUG storybook” produced by the Radiological Society of North America and the American College of Radiology (ACR). In the exam room, radiologic techs are generally responsible for:
Undressing the child and providing the hospital gown
Positioning the child under X-ray machinery in the exam room
Arranging the child in “froggy” position for catheter insertion
Cleaning the child’s genitals prior to catheter insertion
Inserting the catheter into the child’s urethra
Restraining the child with bodily force or immobilizing them using a Papoose board if they resist the procedure
From there, the radiologist will enter the exam room to take over.
Part 5: Radiologists
The VCUG procedure is generally performed by the radiologist with assistance from radiologic techs. Regardless of the radiologists’ participation in actual VCUG performance, they’re responsible for reading your child’s test results with an expert eye.
While the radiologist is the most qualified professional in the room to interpret VCUG test results, they aren’t involved in preparing families for what’s to come in the exam room. In fact, most radiologists don’t even have a face-to-face relationship with patients at all. This is especially true for the preschool-aged children who are forcibly immobilized on the exam table, enduring painful urethral penetration at the hands of adults that they’ll never see face-to-face.
“Radiologists, who generally have greater training in radiation biology and the risks of radiation, often do not have a face-to-face relationship with the patients who are being imaged,” says The British Journal of Urology. “A collaborative approach between emergency physicians and radiologists is suggested to help explain these risks to patients.”
Final Conclusions
As you can see, VCUG patients are shuffled between various parties before the VCUG test is actually performed. By that point, an alarming number of parents and families have testified that they were completely unprepared for what happened in the exam room.
“The pain I would experience was not properly described to me or my parents,” one 23-year-old survivor states.
“This procedure is […] a bit like rape. There is no anesthesia, the parents are forced outside of the room when the catheter is inserted […] A lot of parents didn’t even know what the procedure was like. Some of the research assistants couldn’t even be in the room,” reads one 2017 study (emphasis added).
One parent shares her experience with Unsilenced: “They mistook me for someone who hadn’t done the research. Tried telling me [that] ‘children only cry because they don't like being held down.’ I [knew] this to be patently untrue, and refused consent. Not long after this, I met a mum who trusted in the information she was given and consented for her daughter. Both of them were traumatised. The daughter was receiving psychotherapy for severe PTSD.”
“Oftentimes, parents arrive and say, ‘What, a catheter?!’ or ‘What radiation?!’ and there has been absolutely no preparation for these families,” adds Dr. Avrum Pollock, MD.
“The vast majority of VCUG examinations are performed primarily on an outpatient basis, unfortunately often with little or no preparation of the child or parent,” concludes one 2012 study.
“Apart from physical preparation, psychological preparation is necessary for both patients and parents, as they may be anxious due to fear of pain and unknown, urethral catheterization, and radiation use,” reads another 2020 study (emphasis added).
Clearly, medical and non-medical parties involved in voiding cystourethrography are in agreement that adequate preparation is absolutely necessary prior to the VCUG test. By failing to provide essential resources to patients and parents, we are doing families a disservice. Not only are we robbing parents of their right to give informed consent, but we’re also leaving families in the dark for years, if not decades, as they search for any explanation of the unexplained, traumatic effects of this procedure.
At long last, it’s time to equip pediatric patients and parents with the tools, information, and resources they deserved from the start. It’s time to close the gap between practices and providers. Because kids deserve better.
Help Us Close the Gap in Pediatric Urology
The Unsilenced Movement was founded by former VCUG patients. As children, we were failed by various adults on the road to VCUG. Now, we’re committed to closing the gap between providers and families by raising awareness about the VCUG patient experience—and more importantly, the lasting harm that accompanies it.
Join the Unsilenced Movement to advocate for overdue reform in pediatric urology. #MoreThanATest
Sources
Shyu JY, Sodickson AD. Communicating radiation risk to patients and referring physicians in the emergency department setting. Br J Radiol. 2016;89(1061):20150868. DOI: 10.1259/bjr.20150868. EPub 2016 Jan 11. PMID: 26647958; PMCID: PMC4985467.
Azarfar A, Esmaeeili M, Farrokh A, Alamdaran A, Keykhosravi A, Neamatshahi M, Hebrani A, Ravanshad Y. Oral midazolam for voiding dysfunction in children undergoing voiding cystourethrography: a controlled randomized clinical trial. Nephrourol Mon. 2014 May 1;6(3):e17168. DOI: 10.5812/numonthly.17168. PMID: 25032141; PMCID: PMC4090665.
Thank you for your advocacy. I have read literally hundreds of accounts and comments online of the trauma and harmful impacts of this procedures - it is staggering and deeply troubling, Yes kids absolutely deserve better!