The voiding cystourethrogram (VCUG) is a widely performed medical procedure that diagnoses vesicoureteral reflux (VUR), commonly known as kidney reflux, in pediatric patients. Despite its decades-long performance, a lack of consensus exists among medical professionals regarding the standardized protocol for VCUG.
“VCUGs are ordered by many specialists and primary care providers," says one 2016 study, adding that "VCUG protocols vary substantially" among providers. As long as we continue to downplay the importance of standardizing VCUG performance across practices, the children undergoing this procedure—most of whom are preschool-aged girls—will continue to pay the price.
In this blog, we’ll review critical research that supports the need to standardize and enforce VCUG protocol.
Why VCUG Protocol Is Essential for Your Child’s Well-Being
Today, there is no excuse for not enforcing a standardized protocol for VCUG. Since the rise of fluoroscopy in the 1950s, two separate VCUG performance guidelines have been issued by the American Academy of Pediatrics (AAP) in 1999 and 2011. However, research shows that VCUG protocol varies widely between practices.
This isn’t limited to VCUG performance. The absence of standardized protocol results in a broad range of negative effects, including:
Lack of informed consent: The lack of standardized protocol for VCUG prevents parents from giving legally effective consent for their child’s care, such as by downplaying risks and failing to disclose life-threatening effects that may occur.
Lack of education and procedural knowledge: The lack of standardized VCUG protocol can leave parents and patients in the dark about the VCUG test. This not only prevents families from supporting and preparing their child before, during, and after the procedure, but also makes it difficult to advocate for their well-being, increasing the risk of adverse health effects.
Poor treatment for VUR patients: The lack of protocol for VCUG contributes to poor patient care, as denoted in this 2017 study: “VCUG provides a wealth of data on urinary tract function and anatomy, but few standards exist for reporting VCUG findings...Although VUR was often reported, other crucial anatomic and functional findings of the VCUG were consistently underreported across all facility types.”
Increased risk of post-procedural complications: The lack of VCUG protocol increases the chance of post-VCUG complications, some of which can be fatal for some patients.
Increased trauma and pain during VCUG: The lack of protocol perpetuates unnecessary pain and discomfort during the patient experience, such as by using improperly sized equipment, excessive contrast fluid to fill the bladder, unnecessarily filling the bladder multiple times, and inflicting repeat trauma in unnecessary follow-up VCUGs.
Ambiguous medical necessity: Extensive research supports the overperformance of VCUG, including follow-up care and long-term treatment. In addition to not disclosing reasonable alternatives, you'll find that opinions vary drastically between practices when it comes to establishing the medical need for VCUG, especially in lieu of or in combination with other treatment methods. This results in many children undergoing this extremely invasive and traumatic procedure unnecessarily, greatly increasing their risk of adverse health effects in childhood and adulthood.
3 Studies That Raise Concerns About the Lack of VCUG Protocol
There is ample evidence to support the various drawbacks of inadequate VCUG protocol, increasing the risk of harm to patients and families alike.
Here are 3 critically appraised studies that raise concerns about the lack of VCUG protocol:
1. Post-VCUG Complications
Study: "Study of Post-Procedural Complications Associated with Voiding Cystourethrography" (Korea)
This 2007 study analyzed 269 patients who underwent VCUGs from 2005 to 2006. “The procedure is relatively simple, but it involves discomfort and some complications,” researchers write. “We studied post-procedural symptoms and complications in children who underwent VCUG." Of the participants, a whopping 32.7% of patients presented complications after VCUG, including:
Urinary Bladder Rupture: Though uncommon, urinary bladder rupture is a serious risk of VCUG that most hospitals fail to mention. One study reported two cases of infantile bladder rupture (Brazil, 2007). Another 2012 study presented a case of urinary bladder rupture in a healthy 9-month-old infant due to instilled action of dye by high pressure. “The patient's bladder volume, underlying disease, velocity of the contrast media instilled, catheter size, and styles of instillation are important factors to prevent bladder rupture during VCUG,” says the researchers, adding that “delicate attention is needed” to prevent more dire situations. One thing's for certain: having a standardized protocol in place certainly wouldn't hurt.
Post-VCUG UTI: This risk is also rarely disclosed to parents. While post-VCUG urinary tract infections may seem trivial, they can pose a serious threat to patients with compromised genitourinary systems. “We also found that prophylactic antibiotic use did not prevent urinary tract infection nor decrease the rate of complications associated with VCUG,” reads the 2007 study. “Therefore, we suggest that the [VCUG] procedure must be done carefully and we should closely observe the children who undergo VCUG for development of possible complications.”
2. Informed Consent & VCUG Preparation
Study: "AUA Panel Discussion" (United States)
In a 2006 panel by the American Urological Association (AUA), two pediatric providers were interviewed: Dr. David Diamond of Harvard Medical School and Dr. John T. Boyle of the University of Alabama of Birmingham. The discussion revealed various drawbacks to the lack of VCUG protocol, including:
VCUG Overperformance
Q: “I think catheterization is invasive unless there is a real reason to do it. What is your feeling about this?”
Dr. Boyle responds, “What does it cost? Is it worth it? Those are questions that I cannot answer…Undoubtedly, more studies [VCUG tests] are being done than absolutely need to be done.”
Education & Preparation
Q: “In ordering a procedure, do you feel that it is your obligation to discuss with the parents what the procedure involves? Oftentimes, parents arrive and say, ‘What, a catheter?!’ or ‘What radiation?!’ and there has been absolutely no preparation for these families. What do you think should be the clinician’s responsibility for preparing the family for both procedures that can involve pain?”
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.”
Dr. Boyle replies, “Our nurses do tell the parents that their child may be restrained.”
Hundreds of former VCUG patients report adverse health effects that aren't being disclosed to parents prior to a VCUG test being ordered. It’s alarming to think that some families arrive on test day without knowing the two most basic elements of the procedure, including:
Catheterization, which typically requires children to be restrained or strapped down for the insertion due to severe pain and distress
Ionizing radiation, the sole risk listed for VCUG on most medical websites that promote and market the test
If both providers and radiologists are unwilling or unable to prepare families for the procedural steps and risks associated with VCUG, it’s no wonder that so many children have walked away with debilitating sexual and medical trauma. Until true informed consent is obtained from parents and better care is provided by both the provider and radiology specialists, pediatric patients will continue to pay the price.
3. Ionizing Radiation Isn't a Negligible Risk
Study: "Fluoroscopy-controlled voiding cystourethrography in infants and children: are the radiation risks trivial?" (Europe)
In this 2006 study, researchers point to the longstanding disregard for ionizing radiation during the VCUG procedure. Given that so many patients undergo repeat VCUGs every year, often without medical necessity, providers must refrain from sweeping this important risk under the rug and instead devote sufficient time to educating families.
“Mean radiation risks for genetic anomalies and carcinogenesis following VCUG during childhood were estimated to be up to 15 per million and 125 per million, respectively,” researchers assert. “Radiation risks associated with pediatric patients undergoing VCUG should not be disregarded if such a procedure is to be justified adequately.”
Moreover, children’s bodily tissues are significantly more sensitive to ionizing radiation, a well-known fact in the medical community. This increases the risk of numerous cancers after exposure, including leukemia, brain, breast, skin, and thyroid cancers.
Says one 2019 study: “Children’s developing tissues and organs are approximately 10-fold more sensitive to ionizing radiation than adults […] Thus, radiation risks associated with VCUGs are not negligible” (emphasis added).
This is echoed in another 2009 study, which reads, “The risks associated with radiation exposure are higher in children than in adults.” Researchers noted that effective radiation doses “increased with age” and were higher in girls. While the study confirms that radiation doses during VCUG “may be low, they are not negligible” (emphasis added).
Radiation Doses for VCUG “Vary Widely” for VCUG
Again, due to the lack of standardized protocol for VCUG, radiation doses vary widely between practices. There are many safe alternatives that involve significantly less radiation exposure (such as DMSA) or no radiation at all, such as contrast-enhanced voiding urosonography (ceVUS).
A 2024 study reads, “Although a diagnostic study can be achieved with a relatively low radiation dose by using careful technique and modern equipment, in practice, the range of doses is extremely wide.”
“The literature has shown significant variability among institutions regarding the VCUG protocol used,” reads one 2019 study, “as well as inconsistent reporting of the findings from the VCUG between institutions.”
Join the Unsilenced Movement
The Unsilenced Movement was founded in 2023 by former VCUG patients to raise awareness about the real and lifelong consequences of VCUG in childhood. Decades of substantial evidence exist to support the lack of informed consent and standardized protocol for VCUG, yet providers are neglecting to disclose all the risks to parents nor invest in safe, available alternatives.
That’s why our team is committed to advocating for overdue reform in pediatric urology, educating parents and families, and saving other children from suffering the same fate as us, including chronic illnesses, PTSD, long-term avoidance of medical care, pelvic floor dysfunction, suicide attempts, self-harm, vaginismus, and symptoms of child sexual abuse, and more.
Yikes, the photo of the hands is so triggering!Thank you for raising awareness.