Abstract
AimThe aims of this study were to evaluate health-related quality of life (HRQoL) in children with sacrococcygeal teratoma and to explore the effect of the scar on physical, emotional and behavioral aspects.MethodsA cohort of children operated on for sacrococcygeal teratoma between 2000 and 2013 at Lund University Hospital, Sweden, and their parents were interviewed. HRQoL was evaluated with PedsQL, and scar satisfaction was estimated through Patient Observer Scar Assessment Score (POSA).ResultsAll eligible children (n = 17) were included (100% response rate). Median age was 7.3 years (range 3.5–16.0). Mean total PedsQL score was 92.3 (range 72.0 to 99.0). Patients with comorbidity scored lower (87.5) than those without (95.0) (p < 0.05). Pain during sitting down was reported by two (20%) patients, and itching was reported by another two patients (20%) aged > 8 years. No children reported that they avoided situations due to the scar, and most (80% of children and 90% of parents) reported absent or only mild negative emotions when considering the scar.ConclusionChildren with sacrococcygeal teratoma had a good overall HRQoL, but comorbidity reduced the outcome. A few children reported scar-related impact on physical, behavioral and emotional aspects.
Highlights
Sacrococcygeal teratomas are rare congenital tumors with a birth prevalence of 1:10,000–1:40,000
Transient problems with micturition and defecation may occur in otherwise healthy children, complications following sacrococcygeal teratoma often constitute a chronic condition with a potential to reduce health-related quality of life (HRQoL)
This study showed that children born with sacrococcygeal teratoma had a very good overall HRQoL
Summary
Sacrococcygeal teratomas are rare congenital tumors with a birth prevalence of 1:10,000–1:40,000. Prenatal compression of surrounding pelvic structures and surgical trauma contribute to the well-described complication profile including urinary tract and bowel dysfunction [2, 6, 7]. In addition to functional considerations, children with sacrococcygeal teratomas often have a distinct scar. Transient problems with micturition and defecation may occur in otherwise healthy children, complications following sacrococcygeal teratoma often constitute a chronic condition with a potential to reduce HRQoL. Previous studies have found reduced HRQoL in children with urinary tract and bowel problems [9,10,11], which may imply that children born with sacrococcygeal
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