Beyond surgery: Quality of life in survivors of sacrococcygeal teratoma.

BACKGROUND

Sacrococcygeal teratoma (SCT) is the most frequent congenital tumor in neonates. Despite excellent survival rates after early surgical resection, survivors may face significant long-term sequelae that affect health-related quality of life (HRQoL).

METHODS

We conducted an ambispective cohort study of all SCT patients treated at a tertiary pediatric hospital between 1995 and 2020. Clinical, surgical, and follow-up data were collected, and HRQoL was evaluated using the PedsQL 4.0 Generic Core Scales and Spinal Cord Injury Module, compared with age- and sex-matched controls.

RESULTS

We included 18 SCT patients treated at our center. HRQoL was evaluated in 12 patients. Median age at inclusion was 17.1 years. Complications occurred in 72.2% of patients, and recurrence in 27.7%. Functional sequelae included urinary (55.6%), digestive (46.2%), and neurological (23.1%) dysfunctions. HRQoL scores were significantly lower than controls (patients 73.1 vs 86.7; p= 0.002). Urinary dysfunction was the main determinant of impaired HRQoL, impacting physical, emotional, and social domains. The presence of associated congenital anomalies (61.1%) was also frequent.

CONCLUSIONS

Although survival after SCT resection is excellent, functional morbidity remains high. Urinary dysfunction is the leading cause of reduced HRQoL. Long-term multidisciplinary follow-up -including urology, gastroenterology, and psychological support- and systematic HRQoL assessment are essential to optimize long-term outcomes in this population.