MC BROWNa, MS PEARCEa, J SALOTTIa, AW CRAFTb, J HALEb European Bone Tumour Outcome Study (EBTOS): Quality of life and functional outcomes of bone tumour survivors MC BROWNa, MS PEARCEa, J SALOTTIa, AW CRAFTb, J HALEb aInstitute of Health and Society, Newcastle University, UK bNorthern Institute for Cancer Research, Newcastle University, UK Introduction Evidence relating to Quality of Life (QoL) and functional outcomes of bone tumour survivors is often conflicting - recent reviews surmise that compromised QoL is not consistently found.1,2 Some studies report deficits in marriage3,4,5, employment4,6,7 and education7 in comparison to siblings and population norms, while others do not8. However stronger evidence has been found relating to functional aspects of QoL. 1,9 Methodological difficulties involving small sample sizes and inconsistencies between studies in the measures used have been compounded by the multidimensional and elusive nature of QoL and also the variations in the definition of function. To achieve greater clarity of QoL and function in this survivor population the large European cohort of bone tumour survivors (EBTOS) was established. Figure1: Diagrams showing a) amputation levels b) rotationplasty operation and c) self extending paediatric endoprosthesis Marriage and children With the exception of UK females aged 20-24 years, all other German and UK males and females reported marriage rates below those expected for their respective ages and nationalities. Overall 434 (61%) patients were ‘single’. Only 146 (21%) had children. However, only 55 (10%) felt that not having children was a result of their treatment, although 88 (16%) chose to say they did not know (Figure 2). Education, employment and insurance 532 (76%) had been educated past compulsory level education and 177 (25%) were still in education. Only 41 (6%) patients reported to be unemployed while 348 (49%) were employed full-time and 91 (13%) were part-time. There was evidence that cancer and its treatment had affected employment. 138 (22%) reported having to change job and 454 (64%) felt their job opportunities had been affected. German patients were most likely to feel this way. 166 (24%) had been refused life insurance. However a further 115 (16%) didn’t know if they had and 209 (30%) felt that it was not applicable to them (Figure 3). Physical activity 520 (74%) responded that they took part in independent sports such as cycling, swimming and fitness training. However, a much lower number, 135 (19%) took part in team sports such as tennis, basketball and football. UK patients were the least active. Methods 1145 survivors of Ewing’s Sarcoma and Osteosarcoma who were younger than 40 years at survey, were 16 years or older at diagnosis and more than 5 years from diagnosis were identified by European bone tumour trial offices. Patients were sent a self-completion questionnaire via their clinician which addressed several areas including marriage, offspring, education, employment, physical activities and health-related quality of life as measured by the SF-36 and self-esteem assessed by the Rosenberg Self Esteem Scale (RSES). This was a preliminary examination of the cohort and is descriptive in nature. Association between categorical variables was assessed by chi-squared tests. T- tests were used to compare patient data and population norms for the Physical (PCS) and Mental (MHS) component summary scores of the SF-36 and also the RSES. Marriage rates were compared to population rates for the year in which data was collected. Results 714 patients treated in either the UK, Germany or the Netherlands returned a completed questionnaire. The median age at survey was 26 years (range 16-52). German patients had less time from diagnosis (P=0.04), and the location of tumours and their subsequent treatment varied between the countries (Table 1). Both the German and UK patients scored below their respective population norms on the PCS. Germans also did so on the MCS. However, these two countries scored above average self-esteem scores. There were no significant differences for the Dutch patients on these measures (Table 2). Figure 2: If you have no children, do you think that this is a result of your bone tumour and/or treatment? Figure 3: Have you ever been rejected life insurance due to bone tumour history? Table 1: Patient tumour site & subsequent treatment by country of treatment UK (n=253) Germany (n=430) Netherlands (n=31) Total (n=714) P- value Tumour Location (N, %) Axial Upper Limb Lower Limb 17 (6.7) 42 (16.6) 194 (76.7) 50 (11.6) 56 (13.0) 324 (75.4) 5 (16.1) 9 (29.0) 17 (54.8) 72 (10.1) 107 (15.0) 535 (74.9) 0.015 b Radiotherapy (N, %) Yes No 54 (21.3) 199 (78.7) 150 (34.9) 280 (65.1) 12 (38.7) 19 (61.3) 216 (30.3) 498 (69.8) 0.001 b Type of Surgery (N, %) No surgery Amputation Rotationplasty Endoprosthesis Conservative surgery with recons. Conservative surgery no recons. 36 (14.2) 57 (22.5) 1 ( 0.4) 111 (43.9) 13 (5.1) 35 (13.9) 28 (6.5) 97 (22.6) 46 (10.7) 103 (24.0) 68 (15.8) 88 (20.5) 6 (19.4) 7 (22.6) 4 (12.9) 1 (3.2) 70 (9.8) 161 (22.6) 51 (7.1) 215 (30.1) 87 (12.2) 130 (18.2) <0.001c Full references are available on request Conclusions Low reporting of outcomes such as educational achievement, marriage, unemployment and insurance difficulties may be due to the survivors’ relatively young age. German patients were most likely to display the greatest deficits in many social outcomes but UK patients were the least physically active group. The variability demonstrated between the three European patient groups may represent the influence of differing tumour locations and subsequent surgical procedures and also length of time from diagnosis. However, despite the effects on different aspects of QoL, it appears that self- esteem in this patient group is better than average. The findings warrant further investigation into treatment factors which may influence function and QoL in this large cohort of bone tumour survivors and also follow up of this cohort at an older age. Table 2: Mean scores for the SF-36 summary scores and the Rosenberg Self Esteem Scale compared to population norms by country of treatment UK German Netherlands Scale N Sample Pop’n Norm P-value Pop’n Norm SF-36 - PCS 242 45.2 50.8 <0.001 403 48.5 50.6 31 49.3 49.7 0.802 SF-36 - MCS 51.0 52.2 0.071 49.5 51.4 53.9 52.1 0.367 RSES 251 31.81 30.55 424 33.14 31.73 33.10 31.60 0.095 Full references available on request