The Scandinavian Sarcoma Group Central Register: 6,000 patients after 25 years of monitoring of referral and treatment of extremity and trunk wall soft-tissue sarcoma

Abstract

PurposeWe wanted to examine the potential of the Scandinavian Sarcoma Group (SSG) Central Register, and evaluate referral and treatment practice for soft-tissue sarcomas in the extremities and trunk wall (STS) in the Nordic countries.BackgroundBased on incidence rates from the literature, 8,150 (7,000–9,300) cases of STS of the extremity and trunk wall should have been diagnosed in Norway, Finland, Iceland, and Sweden from 1987 through 2011. The SSG Register has 6,027 cases registered from this period, with 5,837 having complete registration of key variables. 10 centers have been reporting to the Register. The 5 centers that consistently report treat approximately 90% of the cases in their respective regions. The remaining centers have reported all the patients who were treated during certain time periods, but not for the entire 25-year period.Results59% of patients were referred to a sarcoma center untouched, i.e. before any attempt at open biopsy. There was an improvement from 52% during the first 5 years to 70% during the last 5 years. 50% had wide or better margins at surgery. Wide margins are now achieved less often than 20 years ago, in parallel with an increase in the use of radiotherapy. For the centers that consistently report, 97% of surviving patients are followed for more than 4 years. Metastasis-free survival (MFS) increased from 67% to 73% during the 25-year period.InterpretationThe Register is considered to be representative of extremity and trunk wall sarcoma disease in the population of Scandinavia, treated at the reporting centers. There were no clinically significant differences in treatment results at these centers.

Soft‐tissue sarcoma in adolescents and young adults compared with older adults: A report among 5000 patients from the Scandinavian Sarcoma Group Central Register

“…7 In addition, there is an ongoing discussion regarding the optimal age limit for AYA. Due to the heterogeneity of STS, the numbers of patients in some of the histological subgroups were relatively small.…”

“…As discussed earlier, there has been reclassification of some subgroups during the years, and only 25% have been peer-reviewed by the SSG morphology group. 7 In addition, there is an ongoing discussion regarding the optimal age limit for AYA. 28 There were several differences noted between AYA and OA with regard to the clinical presentation, treatment, and outcome of STS, in which some risk factors such as high grade and large tumor size were found to be more frequent in OA, and other risk factors such as deep location and unfavorable tumor site were more frequent among AYA.…”

“…Smaller hospitals in participating countries also report their data, and it is estimated that the register accounts for approximately 70% of the Scandinavian population diagnosed with an STS between 1986 and 2011. 7 Data were collected by designated physicians at each sarcoma specialist center in each country. A specific standardized report paper form was used and reported to the national quality registers.…”

“…4 Soft-tissue sarcomas (STS), which largely arise in connective tissue, are a group of tumors for which little is known in terms of recurrence-free survival and overall survival (OS) for all age groups. 7 Therefore, we leveraged the SSG Central Register to identify possible differences in clinical presentation, intervention, and outcome between AYA and OA with STS. 5 To our knowledge, only a few population-based sarcoma registers include information regarding age and histological subtypes, and the knowledge regarding STS in the AYA population therefore is limited.…”

“…A recent report demonstrated that the coverage was good compared with the incidence in the national cancer registers, and the register therefore could be considered to be representative of the incidence of extremity and trunk wall sarcomas in the Scandinavian population. 7 Therefore, we leveraged the SSG Central Register to identify possible differences in clinical presentation, intervention, and outcome between AYA and OA with STS.…”