This article by ERN eUROGEN ePAG Representatives Kate Tyler and Dalia Aminoff reflects the presentation they delivered during the ERN eUROGEN Thematic Session at the European Association of Urology annual congress on 15 March 2026. Drawing on their patient advocacy and lived experience, they explore why lifelong urological surveillance matters for individuals with anorectal malformation, and how integrated, compassionate care can improve long-term outcomes and quality of life.
Introduction
For individuals born with Anorectal Malformations (ARM), care does not end after childhood surgery; it evolves into a lifelong journey requiring coordinated, multidisciplinary management.
While advances in neonatal surgery and paediatric care have transformed survival, they have also revealed the long-term realities of living with ARM. Many patients continue to face complex medical, functional, and psychosocial challenges, particularly those affecting renal and urological health.
Chronic kidney disease (CKD) and end-stage renal disease (ESRD) remain significant risks into adolescence and adulthood. These complications are among the leading contributors to long-term morbidity and reduced life expectancy in this population. As such, the focus of care must shift from short-term correction to sustained preservation of organ function and quality of life.
The Importance of Ongoing Renal Surveillance
Protecting kidney function requires proactive, structured, and lifelong monitoring. Renal deterioration can be insidious, often progressing without obvious symptoms until advanced stages. For this reason, early detection through routine surveillance is critical.
Individuals with ARM, particularly those with associated urological anomalies, should undergo regular assessment, with annual review by a nephrologist where concerns exist.
Key components of surveillance include:
- Annual urinalysis to detect proteinuria, an early marker of renal damage
- Blood pressure monitoring to identify hypertension, which may indicate underlying renal impairment
- Renal and bladder ultrasound to assess kidney growth, structure, and urinary tract dynamics
This structured approach enables early identification of:
- Hydronephrosis
- Renal scarring
- Reduced renal growth or declining function
Early intervention, whether medical, surgical, or behavioural, can significantly alter disease trajectory and prevent progression to advanced renal failure.
Monitoring High-Risk Conditions
Within the ARM population, certain conditions confer a particularly high risk of renal deterioration and therefore require intensified follow-up.
- Neurogenic bladder: Dysfunctional bladder emptying can lead to high intravesical pressures, urinary stasis, and reflux. Regular urodynamic assessment and imaging are essential to prevent long-term kidney damage.
- Posterior urethral valves (PUV) survivors: Even after successful early treatment, these individuals remain vulnerable to progressive renal decline and require lifelong monitoring.
- Augmented bladders or urinary diversions: While often necessary for continence and quality of life, these interventions are associated with increased risks of malignancy, metabolic disturbances, and infection. Structured, lifelong surveillance is essential.
These high-risk groups highlight the importance of personalised care pathways tailored to each individual’s anatomy, surgical history, and evolving clinical needs.
Impact on Quality of Life
The benefits of regular monitoring extend far beyond clinical outcomes. Proactive care reduces the likelihood of preventable complications, hospital admissions, and emergency interventions. It allows individuals to maintain greater independence and participate more fully in education, employment, and social life. For patients and families, consistent follow-up also provides reassurance, replacing uncertainty with a sense of control and partnership in care.
Psychological and Emotional Considerations
The lifelong impact of ARM extends beyond physical health. Many individuals carry the psychological effects of early medical experiences into adulthood. Repeated hospitalisations, surgeries, and invasive procedures during childhood can result in:
- Feelings of vulnerability, loss of control, or stigma
- Anxiety and depression
- Features of post-traumatic stress
These experiences may shape how patients engage with healthcare systems later in life. Some may avoid follow-up due to fear or mistrust, while others may struggle with communication or adherence to treatment plans. A trauma-informed, compassionate approach is therefore essential. Building trust, validating experiences, and involving patients in decision-making can significantly improve long-term engagement and outcomes.
The Need for Integrated, Lifelong Care
Optimal outcomes for individuals with ARM depend on seamless collaboration between paediatric and adult healthcare services. Care must be continuous, coordinated, and responsive to changing needs across the lifespan.
A multidisciplinary team approach is essential and may include:
- Urologists
- Nephrologists
- Colorectal surgeons
- Psychologists and mental health professionals
- Specialist nurses and allied health professionals
This model ensures that both medical and psychosocial aspects of care are addressed, supporting not only survival but long-term well-being.
Shared Responsibility
Managing ARM is not the responsibility of a single clinician or specialty. It requires sustained collaboration, clear communication, and shared ownership across healthcare systems. Equally important is empowering patients to become active participants in their own care. Education, continuity, and accessibility are key to ensuring that individuals do not become lost to follow-up—particularly during vulnerable transition periods such as adolescence and early adulthood.
Conclusion
Despite the expertise of paediatric surgeons and early medical teams, many individuals with ARM continue to face significant health challenges throughout life. Without structured and sustained follow-up, the risks of CKD and ESRD remain substantial.
A lifelong, multidisciplinary approach, grounded in early detection, regular surveillance, and compassionate care, is essential. By integrating medical, psychological, and social support, healthcare providers can move beyond simply managing disease to enabling individuals with ARM to lead healthy, independent, and fulfilling lives.
Ultimately, success is not measured solely by surgical outcomes but by the ability to preserve function, dignity, and quality of life throughout the lifespan.
