Introduction Survivors of bone tumours diagnosed in childhood or early adulthood are reported to have more impairment of health related QOL than most other cancer survivor groups. Reports of the relationship between QOL and local treatment strategy have been inconsistent. To clarify this issue a European cohort of bone tumour survivors was identified. This report forms a baseline for further analyses.

Methods Osteosarcoma and Ewing's sarcoma survivors were >5 years from diagnosis, <40 yrs at diagnosis and >16 yrs at time of survey. 1145 eligible survivors were mailed a questionnaire which included socio-demographic data, recall of treatment, SF36, Rosenberg Self Esteem Scale, EORTC Body Image & Sexuality modules and TESS to assess physical function. Statistical analysis was with χ² and t test using Stata software.

Results 714 (62%) survivors returned questionnaires (253 UK, 31 Netherlands, 430 DE). Median age at diagnosis was 15 yrs (1–38) and at survey was 26 yrs (16–52). Time since diagnosis was 5–20 yrs (median 11). Survivors had: Ewing's sarcoma (319), osteosarcoma (395), upper extremity site (107), lower (535), axial (72), amputation (161), rotationplasty (51), limb salvage (502). Most were single and childless, only 6% were unemployed while 64% felt that job opportunities were affected. SF36 scores showed impaired physical (UK and DE) and mental health (DE) compared to population norms, but enhanced self esteem. There were national differences in sub-scale scores.

Conclusions This overview of the EBTOS cohort confirms areas of impaired QOL balanced by enhanced self-esteem, while also demonstrating variability between the national groups.