Scandinavian Sarcoma Group Ass. Prof. Otte Brosjö,, Karolinska Hospital, Stockholm
The Scandinavian Sarcoma Group Organisation of Care and Research
Quality management - the SSG experience Multidisciplinary approach = quality in care Communication Protocols and guidelines The Registry Population based studies - RESEARCH
Comprehensive Sarcoma Center (CSC) A multidisciplinary approach to the patient Orthopaedic / Abdominal surgeon Cytologist Pathologist Cytogenetics Imaging Patient Oncologist (Pediatric/Adult) Treatment plan Surgeon: Plastic Head & Neck Neuro Thorax Surgery Radiotherapy: Preoperative Chemotherapy: Neoadjuvant Intraoperative Adjuvant Postoperative Intra-arterial Sequential ILP Brachytherapy Hyperthermia Follow-up Centralized registration
Quality management the SSG experience Multidisciplinary approach = quality in care Communication = meetings Protocols and guidelines The Registry Population based studies - RESEARCH
SSG meetings Plenary meeting every other year Working group meetings every year Surgery Oncology Pathology Radiology Tumor biology Patient care
SSG-plenary meetings Oslo 1979 1983 1986 1999 2009 Copenhagen 1980 1983 1987 Malmö/Lund 1980 2011 Helsinki 1981 1985 1990 1994 2013 Gothenburg 1981 1993 2003, 2nd ISG/SSG Stockholm 1982 1988 1995 2001 2002 Uppsala 1984 Reykjavik 1989 1996 2005 Århus 1991 Bergen 1992 2007 Trondheim 1997 Snekkersten 1998 Åbo 2000 Capri St. Petersburg 2004 Cetraro, Italy 2000, 1st ISG/SSG 2006, 3rd ISG/SSG
SSG meetings Plenary meeting every other year Working group meetings every year Surgery Oncology Pathology Radiology Tumor biology Patient care
Orthopedic sarcoma network All sarcoma surgeons in Scandinavia Internet connection Difficult cases presented Free discussion and solutions If needed, surgeon travel to other sarcoma center
International network EORTC EMSOS ISOLS ISG SSG ESMO CTOS SIOP
Quality management the SSG experience Multidisciplinary approach = quality in care Communication Protocols and guidelines The Registry Population based studies - RESEARCH
Osteosarcoma SSG II Combination therapy in OS 1982 1990 SSG VIII Therapy of OS 1990 1998 ISG/SSG I An Italian-Scandinavian treatment and research protocol for high-grade 1997 2000 osteosarcoma of the extremities ISG/SSG II Treatment of metastatic and pelvic osteosarcoma 1998 2003 SSG XIV A Scandinavian treatment research 2000 2004 protocol for extemity localized highgrade osteosarcoma Euroboss I A European treatment protocol for bone sarcoma in patients older than 40 years 2003 Euramos I An American/European treatment protocol 2004 for OS in patients <40 years EURELOS European relapsed osteosarcoma registry 2005
Ewing s sarcoma SSG IV Combined modality therapy in EWS 1984 1990 SSG IX Therapy of EWS 1990 1999 ISG/SSG III ISG/SSG treatment protocol for 1999 2007 non-metastatic EWS Since 2008 standard therapy in EWS ISG/SSG IV ISG/SSG treatment protocol for 1999 2007 high-risk EWS
Soft Tissue Sarcoma SSG I Adjuvant chemotherapy in STS 1981 86 SSG V Treatment program for STS 1986 SSG X Treatment of metastatic STS (VIG) 1991 97 SSG XII Metastasecetomy and CHT for lungmet. 1996 97 from STS. An EORTC/SSG randomized phase III study SSG XIII Treatment protocol for adults with 1998 07 high-risk STS in extremities and trunk wall SSG XVIII/AIO Adjuvant study for high risk GIST 2004 2008 SSG XX Modified treatment protocol for adults 2007 with high-risk STS in extremities and trunk wall
Guidelines for treatment of metastatic STS in adult patients With a curative intent With a palliative intent Chemotherapy-Surgery-Radiotherapy
Guidelines for treatment of abdominal sarcomas Preoperative diagnosis and planning Surgery Chemotherapy, radiotherapy Follow-up Centralized management!
Quality management the SSG experience Multidisciplinary approach = quality in care Communication Protocols and guidelines The Registry Population based studies - RESEARCH
SSG Registry 1986 2010 All sarcoma centers in Sweden (5) and Norway (3) register patients, Finland (1) Almost population based for Norway and Sweden. Referral pattern, treatment, prognosis etc.
SSG Central Registry 11092 patients 1986- May 2010 5503 Soft tissue sarcomas in extremity and trunk wall 2870 Bone sarcomas + Giant cell tumors 2277 Abdominal/Head-Neck/Gynecology sarcomas
SSG Registry Important to assess sarcoma treatment in a whole population Conclusions from trials need to be validated in non-selected settings
SSG Registry in Lund Improving data quality by registry inquiry when data are missing or incongruent. Control runs
Must be recorded Hospital Age at Diagnosis Sex Date of Diagnosis Referral pattern Metastasis at Diagnosis Site Location Number of operation for primary. Opdate Other treatment or protocol number Histology = Sarcoma/GCT Malignancy grade/mgna Size Follow-up date. State at follow-up Death date. Reason for death
Example of quality control SSG registry 1986 2004 3504 patients with STS Follow-up reported in 90% of patients. Median follow-up 5 years.
Referral before surgery of STS 100 90 80 77 78 84 93 70 60 58 1986-89 50 40 36 43 42 1990-94 1995-99 2000-03 30 20 10 0 Subcutanoues Deep
Surgical treatment 2702 patients without metastases were operated for primary tumor at a sarcoma center 6 % primary amputations. But, no improvement in reported surgical margins only 55 % wide 2000-2004???
More radiotherapy? before 1990: 16 % 2000-2004: 38 % And chemotherapy increased from 3 % to 14%
Improved local control? 1986-99: 0.78 1.0 Local control rate 2000-05 1995-99: 0.87 2000-05: 0.90 0.8 0.6 1986-89 1995-99 0.4 0.2 0 0 1 2 3 4 5 years postoperatively
Do local recurrences make a difference? Local recurrence leads to increased morbidity and a high risk of amputation (Trovik et. al). Local recurrence was the most important risk factor for metastases 2 years after surgery (Engellau et. al).
Improved survival? Overall 5 years metastases-free Metastasis free survival survival: 0,69 1.0 0.8 2000-04 1995-99 0.6 1986-89 0.4 0.2 0 0 1 2 3 4 5 years
Local recurrenc after treatment of osteosarcoma SSG II 6% SSG VIII 7% SSG XIV 4% Bologna 6% Münster 8% COSS 5% Vienna 2,3%
Quality management the SSG experience Multidisciplinary approach = quality in care Communication Protocols and guidelines The Registry Population based studies - RESEARCH
Quality control in registry research Register data has to be checked Missing data has to be completed Diagnosis has to be reviewed by the Pathology Board
SSG theses
Chest wall sarcomas SSG Registry Sarcoma Centers Swedish Cancer Register Non-speciality hospital All diagnoses was reviewed by the SSG Pathology Board
Surgical margins chest wall CS wide marginal intralesional Sarcoma center 25 26 4 Non-specialty hospital 2 18 22
Local recurrence chest wall CS Sarcoma center 16 % (9/55) Non-specialty hospital 57 % (24/42)
Surgical margins and survival - chest wall CS
Better outcome at sarcoma centers - chest wall CS
Identification of a high-risk subset of patients with STS of extremity or trunk wall Population based study from Southern health region of Sweden (Pelle Gustafson) 1964-89: 508 pts with STS of extremity or trunk wall (non-metastatic at presentation) Independent variables for development of metastases Presence of vascular invasion Size > 10 cm Presence of Necrosis (not depth and grade)
Outcome according to SIN factor metastasis-free survival Probability of survival 1,0,8,6,4,2 No Yes 0 100 200 300 Months from diagnosis 400 1,0,8,6,4,2 No Yes 0 100 200 300 400 Months from diagnosis 1,0,8,6,4,2 No Yes 0 100 200 300 400 Months from diagnosis Vascular invasion Necrosis Size (> 10 cm) 23% 52% 23%
S I N system Size, Invasion, Necrosis Probability of survival 1,0,9,8,7,6,5,4,3,2,1 Metastasis-free survival 0/1 factor 10y-MFS: 77% 2/3 factors 10y MFS: 32% 100 200 300 Months from diagnosis High-risk
Peripheral tumor growth pattern Pushing growth 1/3 Infiltrative growth 2/3 Local recurrence in 124 adequately treated STS of extremity or trunk wall (J. Engellau) Pushing 0/32 Infiltrative 19/92 Conclusion (Cox regression analysis): Tumors with an infiltrating growth pattern have a high risk of local recurrence independently of margins and depth.
Theses in the future Leiomyosarcoma C. Svarvar, Helsinki Osteosarcoma C. Müller, Oslo Skeletal metastases B. H. Hansen, Århus Radiation therapy and local recurrence in STS N. L. Jebsen, Bergen
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