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.