The surgeon s perspective

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1 RARE CANCERS TREATMENT: THE CHALLENGES The surgeon s perspective Sergio Sandrucci, MD Visceral Sarcoma and Rare Cancers Unit Città della Salute e della Scienza Turin University Medical School, Turin, Italy

2 Conflict of Interest Disclosure no potential or actual conflicts of interest to declare

3 EARLY AND CORRECT DIAGNOSIS CLINICAL EXPERTISE RARE CANCERS CHALLENGES RESEARCH ACCESS TO NEW THERAPIES INEQUALITIES

4 surgery the mainstay of treatment of solid rare tumors (11 out of 12 families) 2 patients out of 3 can be treated by surgery alone 30% more can receive a a combined treatment of radio/chemotherapy and surgery

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7 Gatta G, et al., Epidemiology of rare cancers and inequalities in oncologic outcomes, Eur J Surg Oncol (2017)

8 PATHOLOGIC DIAGNOSIS NEOADJUVANT TREATMENTS RPS SARCOMAS EXTREMITY SARCOMAS TESTICULAR CANCERS H&N GISTs NETs MULTIORGAN DISSECTION LIMB SPARING SURGERY NERVE SPARING LYMPHADENECTOMY FUNCTION SPARING SURGERY ORGAN SPARING SURGERY CURATIVE/PALLIATIVE SURGERY TRANSPLANT SURGERY ADJUVANT TREATMENTS SURGERY OF METASTASES

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10 SURGEON CHALLENGES Expertise in organ surgery Knowledge of the biology of the disease Volume Need for multidisciplinarity

11 Volume multidisciplinarity Referral (dedicated) Centers

12 Study on patients

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14 MDT before surgery MDT after surgery LRFS MDT before surgery MDT after surgery RFS

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18 there can be profound implications for a patient not diagnosed at a sarcoma centre, such as missing the chance of a timely diagnosis of a potentially curable disease, and being spared more extensive surgery The experience of the surgeon is a prognostic factor of overall survival in STS

19 the experienced sarcoma surgeon Must perform almost 50 sarcoma surgeries/year Must act within a multidisciplinary environment Must be able to coordinate collaborations when necessary (with a multidisciplinary surgical team) with the potential for local control weighted against the potential for long-term dysfunction

20 2762 patients: greater propensity for neoadjuvant treatments at ACCs compared with CCCs

21 Patients treated at high-volume centers has 1.9-fold higher odds of undergoing surgical management (P < 0.001), 2.5-fold higher odds of receiving a R0/R1 resection (P = 0.026), 1.8-fold higher odds of an R0 resection (P < 0.001).

22 B) R0/R1 resection (red) versus R2 resection (blue) A) surgical treatment (red) versus non surgical treatment (blue)

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24 POPULATION SURVIVING IN SEMINOMA NON SEMINOMA GERM CELL TUMOR LOW VOLUME HIGH VOLUME

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26 In surgical area, it will be important the definition of the minimum number of surgical operations for HNC to be considered credentialed for this disease. if performance is about practice, competence is a broader field, encompassing technical expertise, medical knowledge, and ability to judge and to make decisions. So, the process of credentialing should encounter also these aspects in a more complex and articulate judgment

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28 high volume surgeons multidisciplinary team

29 In which way the expertise of a centre can be recognized? ONCOPOLICY INSTITUTIONAL ACCREDITATION PROCESS

30 Improving the quality of rare/complex cancer care requires to concentrate expertise and sophisticated infrastructure in reference centres. The foundamental step is the translation of the recommendations into policy decisions: the best interest of the patient should prevail

31 A MULTI-STAKEHOLDER PARTNERSHIP INITIATIVE 32

32 CENTRALIZATION IMPROVES OUTCOMES?

33 Potential criticism to a referral centers policy delay induced by centralization and time to refer the patients low quality of decision-making in multidisciplinary meetings due to the vastly increased numbers of cases needing review

34 networking between centers of advanced treatment and surroundings hospitals is a key element to ensure that expertise travels, rather than patients.

35 COLLABORATIVE RARE CANCER NETWORKS Subnetworks ERN

36 Follow -up Peripheral centers Less complex treatments Network and functional relationship Treatment plan diagnosis Reference center Complex surgery Complex phisical treatments

37 crucial instruments to improve quality of surgical care for patients with rare cancers: research accrual in multicentric clinical trials, assuring data quality control the low number of patients in rare cancers makes it difficult to build a comprehensive evidence-base for practice

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42 RARE CANCERS TREATMENT: THE CHALLENGES FROM THE SURGEON S PERSPECTIVE Defining high quality centers and a network of care by a process of accreditation a collaborative effort among disease thoughtleaders, politicians, advocates and scientific societies.

43 RARE CANCERS TREATMENT: THE CHALLENGES FROM THE SURGEON S PERSPECTIVE In addition to regional expert centers, smaller local centers must be identified to deliver less complex care Sub-networking or integrated networks

44 RARE CANCERS TREATMENT: THE CHALLENGES FROM THE SURGEON S PERSPECTIVE integrated networks increase accessibility and minimize the burden of traveling long distances low access to proper treatments is likely higher in underserved areas

45 RARE CANCERS TREATMENT: THE CHALLENGES FROM THE SURGEON S PERSPECTIVE Struggle to inequalities: well-structured training programs by high quality centers creation of expert centers in underserved geographic areas

46 RARE CANCERS TREATMENT: THE CHALLENGES FROM THE SURGEON S PERSPECTIVE Actively involve patient advocacies To improve patients knowledge and ability to take decisions To secure access to innovative or complex treatments To support research, such as by being involved in the design of clinical trials To advocate at national health policy level.

47 That s all sergio.sandrucci@unito.it

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