Note: I originally wrote this blog a month ago for my health ethics course, hence why it sometimes refers to Module 1, 2, etc. and appraises different sides of the VCUG "debate" so to speak. I am sharing it here (with some edits/changes/additions) because I believe it serves as a beneficial resource on VCUG from an ethics perspective!
“She won’t remember.”
I was around three years old when my doctors used these words to reassure my parents, who were feeling conflicted about consenting to my second voiding cystourethrogram (VCUG), meant to assess my urinary issues.
Today the effects of this procedure permeate my life. A lifetime of undiagnosed physical and mental health struggles doesn’t even scratch the surface of how this has impacted me. A childhood free of unacknowledged PTSD, sleepless nights and nightmares, personality and mood changes, poor self-esteem, and endless more, is one I was robbed of. An adulthood free of fear of intimacy and avoidance of medical care is one I’m not sure I’ll ever fully have.
What’s VCUG?
Voiding cystourethrogram (VCUG) is the gold standard procedure for diagnosing urinary tract issues/abnormalities in pediatric patients (Hekmatnia et al., 2013). VCUG is indicated by a febrile urinary tract infection (UTI) and is particularly proficient in diagnosing vesicoureteral reflux (VUR), a condition affecting ~1% of all children in which urine flows backwards (Kopiczko et al., 2021; Sargent, 2000; Hekmatnia et al., 2013). To perform the procedure, doctors clean the genitalia, insert a catheter to fill the bladder with contrast dye, and then have the child urinate under a X-ray machine that takes images of the urinary system (Kim et al., 2020). VCUGs are primarily performed on preschool aged girls, who are most prone to urinary issues and VUR (Kopiczko et al., 2021).
Main Issues & The Ethical Dilemma
Perhaps the largest issue with VCUG is that the patient perspective is overlooked as former patients are coming forward voicing that the test has given them severe, life-altering medical and sexual trauma. Without any kind of anesthesia, it is understandable how catheterizing a young child who has not yet reached the level of cognitive development required to understand that the procedure is not being done to harm but to help them, may recreate conditions to similar to sexual assault and cause them to perceive the procedure the same way they would perceive a sexual assault. Studies as old as 1994 have acknowledged this. Merritt et al. (1994) aimed to investigate young children’s memory of stressful experiences and claimed that “... this invasive procedure is similar in many respects to incidents of sexual abuse.” A 2004 study that used VCUG patients as proxies for CSA had VCUG conductors rate how frequently features of CSA were also features of VCUG—the results are shown in Table 1 (Pezdek et al., 2004). One study claims that the psychological trauma from VCUG is similar to that of a violent rape (Azarfar et al., 2014).
The only risks disclosed to parents are ionizing radiation, allergic reaction to contrast, dysuria, UTI, and bladder rupture (Guerra et al., 2018). Still, a lack of standardized VCUG protocol means that physicians might not disclose all of these risks to each patient. A 2016 survey conducted across the US and Canada found that VCUG protocols vary substantially, so although there are clear indications for the procedure, there are no clear indications for how to perform the procedure (Frimberger & Mercado-Deane, 2016). The lack of standardized VCUG protocol despite the procedure being performed in vulnerable populations (children) is an ethical issue on its own—a standardized protocol would be primed to protect children and their best interests, thus no standardized protocol leaves room for grave errors. The lack of standardized protocol also causes VCUGs to be historically overperformed (Ming et al., 2019).
The negative psychological effects of VCUG are recognized in literature, however, this knowledge hasn’t been translated to clinical practice. Despite recognition by the medical community that VCUG can be traumatic, psychological risks of the procedure are rarely disclosed. The lack of mention of these psychological risks violates informed consent because as we learn in Module 2, a tenant of informed consent is that decision-makers must be fully informed of all risks. Although young children have no decision-making capacity according to Canadian Pediatric Society policy outlined in Module 5, this also does not mean it’s ethically permissible to neglect informing their parents of all risks and neglect making a best effort to inform the child on all that the procedure entails (explaining the procedure to them before and during it, outlining the short and long-term effects of the procedure to them, etc.).
The notorious ACE study describes that children with adverse childhood experiences have poor long-term health outcomes such as cancer, autoimmune diseases, and psychiatric conditions (Felitti et al., 1998). Many former VCUG patients report having poor health outcomes as adults, as well as experiencing suicidality and engaging in risky behaviours as a result of the test (McDonald, 2024).
The key ethical issue in the case of the VCUG is whether it’s better to subject the child to the psychological trauma of VCUG and its long-term effects to prevent future risk of kidney disease, or save the child the extensive trauma and its effects inflicted by the test but risk future kidney damage. As discussed in Module 1, the four principles that form the basis of ethics in medicine are autonomy, beneficence, non-maleficence, and justice. If former patients wish this had never happened to them and know they would be better off had it not, and parents regret consenting to their child’s VCUG because they realize now that the risks were not worth the benefits, is the principle of beneficence—that healthcare professionals have a moral obligation to act for the benefit of others—being fulfilled? If a former patient takes their own life due to the psychological toll of VCUG, the risk of kidney damage they forgoed will not matter.
As avoidance/refusal of medical care as a long-term consequence of VCUG is becoming more documented, patients are at risk of developing conditions that go undetected and undiagnosed. Without early intervention, risk of cancers like cervical or colon cancer rises dramatically. This again calls beneficence into question: if VCUG prevents the risk of future kidney damage but causes a lifetime of medical PTSD that renders patients unable to seek medical/gynecological care and they subsequently develop cancer, was the procedure beneficial?
Considering the principle of autonomy: when children fight back while the test is being performed and are then restrained, to what degree are they having their autonomy respected? To what degree are children's autonomy respected as adults’ are? To what degree do we recognize their personhood?
Taking all reported consequences of experiencing VCUGs in childhood into consideration, the ultimate result is a paradox wherein the procedure simultaneously causes an increased risk of health issues and a long-term avoidance of the medical care that would be necessary to treat those health concerns in an effective manner that maximizes timeliness (swift and early intervention) and patient compliance. In this way, former VCUG patients are doubly affected by the procedure.
In Defense of VCUG
It’s difficult to overlook the diagnostic utility of VCUG: the test has 100% specificity and 80-90% sensitivity in diagnosing VUR (Zarei et al., 2022). This makes it a mainstay in urology for diagnosing the underlying cause of UTIs.
Many healthcare professionals take a stance against sedation—in order to complete the voiding part of the procedure, children have to be awake. Perhaps sedation could be given during the first part of the procedure, but some also argue that sedation comes with cost, time, and safety risks and reduces the diagnostic accuracy of VCUG by interfering with bladder function (Bates, 2012).
An important argument in defense of VCUG is that it is the only test available to diagnose VUR and other urological issues and by foregoing the procedure, there are risks of kidney damage. While low-grade VUR usually resolves on its own, high-grade VUR requires surgery to prevent severe kidney injury (Mathias et al., 2022).
Rebuttals
The argument that sedation reduces VCUG accuracy has been disproved by multiple studies (Alizadeh et al., 2017; Blumberg, 2011). Sedation has been shown to reduce psychological distress in patients without reducing the accuracy of VCUG (Herd, 2008). It should be noted however that some experience the procedure under sedation as more psychologically distressing than having no sedation, thus healthcare providers must take patients' age and cognitive development, as well as the type of sedation into consideration. Input should be sought out from the patients themselves when and wherever possible since it's critical to involve patients in their own care in order to create a dynamic where they not only feel heard but also feel like they have a sense of control over at least some part of their care. Although children do not have full medical decision-making capacity, this does not mean they should have none.
For many individuals, VCUG may be the only option available to them, however, it is not the only test available. Contrast-enhanced voiding urosonography (ceVUS) is an alternative that has greater diagnostic accuracy than VCUG, no risk of ionizing radiation, and is less traumatic for children (Kapral et al., 2023; Mane et al., 2018). In fact, ceVUS is one of multiple VCUG alternatives. Hospitals are slow to adopt ceVUS, thus it is only available at a few hospitals throughout the US and Canada. ceVUS takes longer to perform and costs families less than VCUG, meaning that physicians can fit more VCUGs into their work day and make more money doing them (Cheng et al., 2023).
Conclusion
Circumstances surrounding VCUG must be changed. The lack of informing patients of alternatives such as ceVUS is ethically problematic and, similarly to the lack of informing of psychological risks, calls into question whether informed consent given for VCUG is viable. Additionally, the lack of standardized protocol and overperformance of VCUG is unjustifiable from a risk versus benefit standpoint. At the very least, offering sedation or anesthesia must be made protocol.
Former patients deserve justice for a lifetime of no answers—left in the dark about why they feel like a CSA survivor despite never experiencing it; why their physical and mental adult health has suffered; why they cannot see the doctor or be intimate with their partner without breaking down or having a panic attack.
It is critical and an ethical imperative that healthcare professionals ensure patients’ needs and safety are at the heart of their care and follow the principles of do no harm by doing everything possible—such as informing patients and parents to the utmost degree and implementing enforceable safeguards—to minimize the traumatic effects of VCUG, which can have immense, life-altering consequences for patients.
Each day I mourn the person I could have been had this procedure not happened to me. I will remember my younger self and I will remember the hundreds of other children who have gone through what I have and continue to go through it today.
I will always remember.
References
Alizadeh, A., Naseri, M., Ravanshad, Y., Sorouri, S., Banihassan, M., & Azarfar, A. (2017). Use of
sedative drugs at reducing the side effects of voiding cystourethrography in children. Journal of research in medical sciences : the official journal of Isfahan University of Medical Sciences, 22, 42. https://doi.org/10.4103/1735-1995.202139
Azarfar, A., Esmaeeili, M., Farrokh, A., Alamdaran, A., Keykhosravi, A., Neamatshahi, M., Hebrani, A., & Ravanshad, Y. (2014). Oral midazolam for voiding dysfunction in children undergoing voiding cystourethrography: a controlled randomized clinical trial. Nephro-urology monthly, 6(3), e17168. https://doi.org/10.5812/numonthly.17168
Bates D. G. (2012). VCUG and the recurring question of sedation: preparation and catheterization technique are the key. Pediatric radiology, 42(3), 285–289. https://doi.org/10.1007/s00247-011-2321-y
Bennett, M. (2023, September 11). As kids, they underwent a common test for utis. as adults, it haunts them as a traumatic “nightmare.” STAT. https://www.statnews.com/2023/09/11/vguc-children-test-uti-stress/
Blumberg, K. Sedation and the VCUG. Pediatr Radiol 42, 290–292 (2012). https://doi.org/10.1007/s00247-011-2323-9
Cheng, J. W., Fernandez, N., Kim, H. H. R., Tang, E. R., Ferguson, M., Nicassio, L. N., Dick, A. A. S., Smith, J. M., & Cain, M. P. (2023). Contrast-enhanced voiding urosonography (CEVUS) as a safe alternate means of assessing vesicoureteral reflux in pediatric kidney transplant patients. Pediatric transplantation, 27(2), e14429. https://doi.org/10.1111/petr.14429
Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., Koss, M. P., & Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. American journal of preventive medicine, 14(4), 245–258. https://doi.org/10.1016/s0749-3797(98)00017-8
Frimberger, D., Mercado-Deane, M. G., SECTION ON UROLOGY, & SECTION ON RADIOLOGY (2016). Establishing a Standard Protocol for the Voiding Cystourethrography. Pediatrics, 138(5), e20162590. https://doi.org/10.1542/peds.2016-2590
Guerra, L. A., Keays, M. A., Purser, M. J., Wang, S. Y., & Leonard, M. P. (2018). Pediatric cystogram: Are we considering age-adjusted bladder capacity?. Canadian Urological Association journal = Journal de l'Association des urologues du Canada, 12(12), 378–381. https://doi.org/10.5489/cuaj.5263
Hekmatnia, A., Merrikhi, A., Farghadani, M., Barikbin, R., Hekmatnia, F., & Nezami, N. (2013). Diagnostic accuracy of magnetic resonance voiding cystourethrography for detecting vesico-ureteral reflux in children and adolescents. Journal of research in medical sciences : the official journal of Isfahan University of Medical Sciences, 18(1), 31–36.
Herd D. W. (2008). Anxiety in children undergoing VCUG: sedation or no sedation?. Advances in urology, 2008, 498614. https://doi.org/10.1155/2008/498614
Kapral, N., Kern, N. G., Corbett, S. T., Leroy, S. V., & Daugherty, R. J. (2023). Viability of contrast-enhanced voiding urosonography as an alternative to fluoroscopy during video urodynamics. Pediatric radiology, 53(8), 1713–1719. https://doi.org/10.1007/s00247-023-05619-4
Kim, Y. J., Cho, B. S., Lee, J., Ryu, H., Byun, H., Yeon, M., Park, Y., Oh, C., & Jeon, Y. (2020). The ABCs of Voiding Cystourethrography. Taehan Yongsang Uihakhoe chi, 81(1), 101–118. https://doi.org/10.3348/jksr.2020.81.1.101
Kopiczko, N., Dzik-Sawczuk, A., Szwarc, K., Czyż, A., & Wasilewska, A. (2021). Analysis of Indications for Voiding Cystography in Children. Journal of clinical medicine, 10(24), 5809. https://doi.org/10.3390/jcm10245809
Mathias, S., Greenbaum, L. A., Shubha, A. M., Raj, J. A. M., Das, K., & Pais, P. (2022). Risk factors for renal scarring and clinical morbidity in children with high-grade and low-grade primary vesicoureteral reflux. Journal of pediatric urology, 18(2), 225.e1–225.e8. https://doi.org/10.1016/j.jpurol.2021.12.017
McDonald, A. (2024). The body keeps the score: an exploratory study on the long-term impact of voiding cystourethrograms (VCUGs). [Abstract] Retrieved from: https://www.linkedin.com/feed/update/urn:li:activity:7177892935105957888/
Merritt, K. A., Ornstein, P. A., & Spicker, B. (1994). Children's memory for a salient medical procedure: implications for testimony. Pediatrics, 94(1), 17–23.
Ming, J. M., Lee, L. C., Chua, M. E., Zhu, J., Braga, L. H., Koyle, M. A., & Lorenzo, A. J. (2019). Population-based trend analysis of voiding cystourethrogram ordering practices in a single-payer healthcare system before and after the release of evaluation guidelines. Journal of pediatric urology, 15(2), 152.e1–152.e7. https://doi.org/10.1016/j.jpurol.2018.12.009
Pezdek, K., Morrow, A., Blandon-Gitlin, I., Goodman, G. S., Quas, J. A., Saywitz, K. J., Bidrose, S., Pipe, M. E., Rogers, M., & Brodie, L. (2004). Detecting deception in children: event familiarity affects criterion-based content analysis ratings. The Journal of applied psychology, 89(1), 119–126. https://doi.org/10.1037/0021-9010.89.1.119
Sargent M. A. (2000). What is the normal prevalence of vesicoureteral reflux?. Pediatric radiology, 30(9), 587–593. https://doi.org/10.1007/s002470000263
Zarei, F., Esmaili, Z., Saeedi-Moghadam, M., & Zeinali-Rafsanjani, B. (2022). Evaluating the accuracy of simplified VCUG in comparison with traditional VCUG for diagnosis of urinary-reflux in children: Radiation dose reduction. Journal of medical imaging and radiation sciences, 53(1), 102–106. https://doi.org/10.1016/j.jmir.2021.10.006
Yes to the words "immense" and "life-altering" to describe the trauma.
Your references are comprehensive.
Thank you.