Objective The overall effect of the reported long-term sequelae following sacrococcygeal teratoma (SCT) excision on the psychosocial and sexual development has not been addressed appropriately in the literature. The aim of this study was to evaluate the psychosocial adjustment of a national cohort of SCT patients using a validated psychosocial questionnaire.

Methods Three paediatric surgery centres in Scotland were contacted to identify those SCT patients who were now 5 years or older. The main outcome measure was the Derriford Appearance Scale 59 (DAS-59) which assesses concerns of everyday living, personal relationships, self-esteem and emotional distress. Following ethical approval, age appropriate invitation letters and information sheets for both parents and patients were sent to prospective participants. Parents/patients were contacted after 2 weeks to arrange an interview to complete the questionnaire.

Results 31/48 (65%) of patients identified with SCT completed the DAS-59. Participant ages ranged from 5 to 35 years (median 12 years). 5/31 (16%) were malignant cases. There were 25 (81%) female participants and 12 (39%) patients older than 16 years. 9/31 (29%) participants indicated concern over their appearance. However, we found low levels of appearance-related distress and overall participants showed positive adjustment to personal relationships and everyday living on the DAS-59.

Conclusions This is the first study looking at the psychosocial adjustment of patients with SCT using a validated psychosocial questionnaire. Encouragingly, we found low levels of appearance-related distress. Future research could identify those factors associated with increased risk of poorer outcomes and highlight those in need of psychological intervention.