The long-term outcome of patients diagnosed with sacrococcygeal teratoma in childhood. A study of a national cohort

Background/Purpose The improved survival of sacrococcygeal teratoma (SCT) has led to increased awareness of its long-term sequelae. Our aim was to assess the long-term outcome of a national cohort using detailed questionnaires. Methods The three paediatric surgery centres in Scotland were contacted to identify all SCT patients >= 5 years of age. Case notes were reviewed. Detailed separate questionnaires were used to assess long-term bowel, urinary and obstetric outcomes and were completed during an arranged interview. Groups were statistically compared using Z-tests or Fisher's exact test. Results Overall, 48 patients were identified but only 31 were available for follow-up. Age ranged from 5-35 years (median 12 years and 8 months). There were 25 (81%) females and 5 (16%) patients had malignant disease. Abnormal bowel function was noted in 42% of patients, with constipation being the commonest complaint (39%) with no obvious predictive features at presentation. Urinary symptoms were reported in 55% of the patients. A total of nine (29%) patients suffered from urgency and/or wetting. Confirmed urinary tract infections (UTIs) were reported by nine patients. Successful pregnancies were reported by two females and neither of their children had SCT. Conclusions This is one of the largest national studies assessing the long-term outcome of patients with SCT. It highlights the significant gastrointestinal and urological long-term morbidities of SCT patients, which is useful for counselling families.