Browsing Over 9 Presentations
Presentation Topic- Public Policy and Patient Advocacy
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- Public Policy and Patient Advocacy
41P - Assessment of rare cancers and sarcoma policy in National Cancer Control Plans (NCCPs) from South American countries: A report from the LACOG Sarcoma Group
- Roberto Carmagnani Pestana (Sao Paulo, Brazil)
Abstract
Background
Rare cancers constitute a heterogeneous group of diseases that, although individually with a low incidence, correspond to 20-25% of new cases of malignancies as a group. Despite this fact, rare cancers – including sarcomas – are often overlooked in National Cancer Control Plans (NCCPs), National Non-communicable Chronic Disease Plans (NCDs), and National Rare Diseases Plans (NRDPs).
Methods
We performed a qualitative review of NCCPs, NCDs, and NRDPs from South American countries, gathered from each ministry of health or equivalent website, and the International Cancer Control Partnership (ICCP) portal. Following an initial assessment of whether rare cancers were mentioned in the documents, we proceeded with an in-depth analysis to provide a descriptive review of how rare cancers and sarcoma were addressed.
Results
We reviewed documents from 12 countries within South America – 7 NCCPs, 9 CNDs, 4 NRDPs. Two countries had no documents to be reviewed. Rare cancers are rarely addressed specifically in any of the documents reviewed. For 5/10 countries with documents reviewed, rare cancers were not mentioned specifically in any of the documents analyzed. The document that provided a more in-depth assessment of rare cancers was NCCP from Argentina, which describes a project for telemedicine for rare cancers and, specifically, a pilot project for sarcomas to improve diagnostics, access to multidisciplinary discussion, and appropriate care.
Country Definition Organization Effective referral Histopathological imaging Research Access to orphan drugs Pop based databases, registries, biobanks Argentina X X X X X - X Bolivia - - - - - - - Brazil - X - - - - - Chile - - - - - - - Colombia x - - - - X - Ecuador - - - - - X - Guyana - - - - - - - Paraguay - - - - - - - Peru - X - - - X X Suriname - - - - - - - Uruguay - - - - - - - Venezuela - - - - - - -
Conclusions
The limited inclusion of rare cancers in the majority of NCCPs/NCDs/NRDPs from South America suggests a lack of awareness and understanding regarding their unique aspects. It is key to enhance the national policy frameworks that tackle the challenges faced by patients diagnosed with rare cancers – including sarcomas – positioning NCCPs as essential strategic documents in this effort.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
R. Carmagnani Pestana: Financial Interests, Personal, Advisory Board: Bayer, Servier, Astellas; Financial Interests, Personal, Invited Speaker: Bayer, Servier, Pfizer, Amgen, BMS, Merck, Knight therapeutics; Financial Interests, Institutional, Invited Speaker: Servier; Non-Financial Interests, Personal, Leadership Role: LACOG, SBOC. B.B. Lopes David: Financial Interests, Personal, Invited Speaker, Participation in the scientific program of the Americas Oncologia International Symposium (08/2019). Air ticket and Accommodation: COI Institute/Americas Oncologia; Financial Interests, Personal, Invited Speaker, Satellite symposium at the Brazilian Congress of Orthopedics: Deciphera; Financial Interests, Personal, Other, Scholarship. Project Manager - SELNET Consortium: Istituto Nazionale dei Tumori; Financial Interests, Personal, Other, Senior Medical Advisor in Sarcomas for Latin America: Orphan DC; Financial Interests, Institutional, Other, Project Manager, Scholarship. Observational study for Quality Assessment of Sarcoma as a model to improve diagnosis and clinical care of rare tumors through a European and Latin American multidisciplinary Network (SELNET) HORIZON 2020-SC1-BHC-2018-2020/H2020-SC1-2018-Single-Stage-RTD: Istituto Nazionale dei Tumori; Non-Financial Interests, Personal, Member, Promotion of training and research, continuing education, health policies, professional defense, national and international relations: SBOC - Brazilian Society of Clinical Oncology; Non-Financial Interests, Personal, Member, Member-FellowStructured educational pathway that spans careers from medical student through to taking on leadership responsibilities. ESO has offered young oncologists an expanding array of educational opportunities, from oncology basics to specialist courses and fellowships, delivered face to face or online: ESCO - College of the European School of Oncology. C. Mello: Financial Interests, Personal, Advisory Role: Boehringer Ingelheim, Servier, Addium; Financial Interests, Personal, Invited Speaker: Servier, Addium. M.L. Gonzalez Donna: Financial Interests, Personal, Research Grant: ASCO-Pfizer. R. Ramella Munhoz: Financial Interests, Personal, Invited Speaker: BMS, MSD, Sanofi, Novartis, Merck Serono; Financial Interests, Personal, Advisory Board: Sanofi; Financial Interests, Personal, Invited Speaker, Invited speaker: Pfizer; Financial Interests, Institutional, Invited Speaker: Roche, Novartis, Bayer, Agenus, Pfizer. M. Zapata: Financial Interests, Personal, Invited Speaker: Amgen, AstraZeneca, Bayer, Biotoscana, BMS, Boehringer Ingelheim, Eli Lilly, Janssen, MSD, Merck-Serono, Novartis, Roche, Sanofi. C.L. Martins: Financial Interests, Personal, Invited Speaker: MSD, AstraZeneca; Financial Interests, Personal, Advisory Board: MSD, AstraZeneca. M.R. Chacon: Financial Interests, Personal, Invited Speaker: Novartis, BMS, Elea, MSD. All other authors have declared no conflicts of interest.
43P - Pathway of patients with rare liver tumors: From the first hospital visit to the definitive treatment in a specialized center
- Maria Bilych (Kiev, Ukraine)
Abstract
Background
Alongside the scarcity of treatment options and the aggressive biology of liver sarcoma (LS), patients with this type of tumor often present with giant tumor size after months of unsuccessful diagnostic and treatment workup in low-volume centers. Awareness about LS among health care professionals of general hospitals could be raised with recognition and making emphasis on factors leading to delay in referral of patients with LS to tertiary care center
Methods
Data on diagnostic and treatment work-up before and after referral to the specialized center of 11 adult patients with primary hepatic and metastatic LS were analyzed.
Results
The median time interval between the first hospital visit and referral to the specialized center was 2.8 months (1.5-5 months). In 4 cases, the diagnosis before referral was liver abscess, in 4 cases – unknown type of tumor, in 1 case – liver hemangioma, in 1 case – liver pleomorphic sarcoma, in 1 case – liver tuberculoma. In almost half of the cases, invasive procedures were performed before referral, including percutaneous draining (n=4), surgical exploration complicated with tumor rupture (n=1), and tumor cytology (n=1), and in the remaining cases (n=5) only imaging before referral was performed. The median tumor size in the greatest dimension was 16 cm. All patients underwent surgical treatment at our center indicated by complications of the giant tumor size with or without tumor rupture. According to the histologic report, there were 4 cases of undifferentiated embryonal liver sarcoma, 2 cases of liver metastases of uterine leiomyosarcoma, 2 cases of liver angiosarcoma, 1 case of primary liver leiomyosarcoma, 1 case of liver metastases of gastrointestinal stromal tumor of small intestine and 1 case of liver PEComa.
Conclusions
Lack of awareness about liver sarcoma among general healthcare professionals is an established issue. However, another concern on the performance of invasive diagnostic and treatment procedures in non-specialized centers should be raised. The latter imposes patients to a tremendous pathway before true diagnosis will be established, substantially worsening oncological, as well as, surgical prognosis.
Legal entity responsible for the study
M. Bilych.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
44P - “Am I rare?” – Patient awareness is the first step in building an adequate treatment path: A survey on neuroendocrine tumors
- Silvia Della Torre (Milan, Italy)
Abstract
Background
Several studies have highlighted the need to improve management of rare cancers, such as neuroendocrine tumors (NETs). To do this best, it is essential to involve and inform patients. This survey aimed to explore patient awareness regarding diagnosis and management of their rare neuroendocrine cancer.
Methods
An anonymous survey was conducted from April to September 2023, recruiting patients with NETs in about 30 clinics in Italy. We collected sociodemographics and diagnostic characteristics and data on patient’s awareness and knowledge about their cancer.
Results
We collected 435 reports. Patients were 45% females and 55% males. Median age was 65 years (21-90). Primary tumors sites were small intestine 29%, pancreatic 24%, lung 10%, other (e.g. MEN, Merkel cell carcinoma, paraganglioma) and non- specified 31%. 33% were followed at a general hospital, 34% at a university hospital and 25% at a clinical research hospital. 85% of patients know they have a rare cancer. Actually 22% of these do not know the real meaning of rare, so only 65% of patients have a full awareness of the meaning of rare cancer. 88% for patients were informed by a specialist about their rarity, only 12% by general clinicians, 9% by internet. 78% of patients know about the presence of a multidisciplinary team in their hospital, both in southern and northern Italy, and 36% were informed about their doctor’s consultation with a reference center about disease management. 43% of patients were enrolled in clinical trials, 57% at a clinical research hospital, 44% at a university hospital, 35% at a general hospital. Almost one in two patients is driving for health tourism, 29% outside their region, especially patients from the south of Italy and regardless of the clinic they are followed in. Patients are not informed about new radioligand therapy (70%), however, 72% are not worried about radioactivity. 77% of patients admit they do not know of advocacy group for patients. Less of 10% consult associations for information about their cancer, compared to 44% and 21% who consult the internet and information materials from their physician, respectively.
Conclusions
There is still work to be done to increase patient awareness and to improve their treatment path.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
45P - The patient voices: Revealing the challenges faced by persons with desmoid tumors in a middle-income country
- Carolina Menezes Chaves (Sao Paulo, Brazil)
Abstract
Background
Desmoid tumors (DT) are rare tumors and can cause significant morbidity and psychosocial harm. Their rarity amplifies challenges, particularly in middle-income countries. To understand these difficulties, the DT patient organization of Brazil (DB) conducted a qualitative study on the challenges faced by Brazilian DT patients (pts).
Methods
From Oct/2022 to Nov/2023, an online questionnaire was made available to pts who joined DB. It gathered data on gender, age at diagnosis, primary site, and prior treatments, as well as personal challenges including pain, travel for treatment, and healthcare trust. Volunteers then openly described their greatest challenges and perspectives. All comments underwent review and were classified based on recurring themes.
Results
A total of 279 pts completed the form. 86% (240) were female, and 14% (39) were male. Age at diagnosis was 30-49 years in 53% (148), 18-29 in 28% (78), 0-17 in 11.5% (32) and 50-69 in 7.5% (21). DT primary site was extra abdominal in 88.5% (247), while 11.5% (32) were intra-abdominal. Surgery was performed in 60.9% (170) of pts. Of these, 58.2% (99) reported a chronic decline in their quality of life as a result, and 59.4% (101) reported recurrence. 46.2% (129) of the pts reported pain, and 22.2% (62) reported insecurity with their healthcare team. 43% (120) of them reported needing to travel for treatment. Of the 243 (87%) pts who answered the two open-ended questions, the most cited challenges were lack of DT information in 32.1% (78) of comments, lack of a specialist team in 23.8% (58), psychological distress in 22.2% (54). The primary perspectives shared by 99 pts were: appreciation for the existence of a patient advocacy organization in 23.7% (24), and desire for further information and support in 20.7% (21).
Conclusions
Lack of information and access to specialists were the major challenges faced by DT pts in Brazil, while their main perspective was gratitude for having a patient advocacy organization and desire for further information and support. Considering the findings, DB has identified its focus for the next 5 years as promoting DT information and facilitating access to specialists.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
46P - The pre-diagnostic general practitioner care of sarcoma patients: A real-world data study
- Emily Holthuis (Amsterdam, Netherlands)
Abstract
Background
There is limited knowledge of the early signs and symptoms of sarcoma that people present with when consulting their general practitioner (GP). However, gaining a deeper understanding of this pre-diagnostic trajectory holds the potential to create referral guidelines and interventions. Our aim was to investigate the pattern of GP visits within the 12 months leading up to individuals’ sarcoma diagnosis and comparing it to a control group without cancer.
Methods
Individuals newly diagnosed with a sarcoma in 2010-2020 were identified through the Netherlands Cancer Registry and linked to Nivel Primary Care Database, covering approximately 10% of the Dutch population. Sarcoma cases were age and gender matched to cancer-free controls (2:1 or 1:1 ratio). Consultations at the GP and the symptoms patients presented with were extracted for the 12 months preceding the diagnosis.
Results
A total of 787 individuals with soft-tissue sarcoma (STS) and 188 individuals with bone sarcoma (BS) were identified. No differences were observed between STS cases and controls up to 8 months before diagnosis, and for BS cases and controls, this pattern persisted up to 7 months before diagnosis. A noticeable increase in the mean monthly number of GP consultations was evident from 4 months to the last month before STS diagnosis, while for BS cases, this increase was already apparent in the 5 months preceding the diagnosis. Most prevalent health conditions for which STS cases contacted the GP were nonspecific and included musculoskeletal neoplasm (26.6%), uncomplicated hypertension (15.6%) and cystitis/other urinary infections (12.2%). Musculoskeletal neoplasm (42.8%), knee symptoms/complaints (9.7%) and shoulder symptoms/complaints (9.7%) were the most frequently recorded heath conditions for BS cases.
Conclusions
An increase in GP consultations was observed before the diagnosis of sarcoma. STS cases predominantly manifested with nonspecific symptoms, whereas BS cases presented with more clinically apparent symptoms. A better understanding of the pre-diagnostic trajectory could aid GPs in early identification of sarcoma patients, potentially leading to the development of strategies to minimize diagnostic delays and improve patient outcomes.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
47P - Sarcoma in the Czech Republic: Update data through 2021 including epidemiology, patients flow and treatment outcomes
- Dagmar Adamkova (Brno, Czech Republic)
Abstract
Background
Czech Republic is a center European country with about 10.5 million inhabitants. The aim of analysis was to collect information on epidemiology, treatment and outcomes of sarcoma patients. The Czech National Cancer Registry (CNCR) has been in operation since 1977, when it was instituted as a national database covering 100% of cancer diagnoses and the entire Czech population. The registration of malignant neoplasms is stipulated by the legislation and it is obligatory. The CNCR is a part of the National Health Information System and is administered by the Institute of Health Information and Statistics of the Czech Republic. Out of about 190 hospitals in total is the fully specialized oncology care provided in 15 Complex Oncology Care Centres (COCC).
Methods
There were analyzed data from the CNCR of sarcoma patients diagnosed and treated between 2005-2021. Data of 8 884 soft tissue (STS) and 1 380 bone sarcoma (BS) patients are available. The primary end-point was the overall survival (OS) and the contribution of treatment centralization.
Results
The average incidence in the last 5-year period (2017-2021) was 640 new STS and 87 BS per year (0.85% of all malignancy). The median age was 64 years in STS and 48 years in BS. The incidence has been increasing for the last two decades to 6 per 100 thousand in year. In the last 15 years, the prognosis hasńt changed (except of gastrointestinal stromal sarcoma and BS). 5year OS in STS was 60.1% during 2005-2009, 61.4% during 2010-2015 and 62.6% during 2016-2021, in BS 46.9%, 57.5% and 56.2% respectively. The treatment results depend on early and correct therapy in experiences centres. During 2012-2016, 147 first-contact hospitals and 223 other health centres have participated in the diagnostics and primary treatment. Only 70% of patients were referred to specialized COCC. During 2017-2021 has been a slight reduction in the number of workplaces, but, still 79.5% of patients only were refered to the COCC.
Conclusions
According to the database of CNCR of the Czech Republic, patients have been surgicaly treated in more than 100 various hospitals. One fifth of these patients have never reached specialized treatment in COCC. The centralization of treatment is the only way to improve the prognosis of these patients.
Legal entity responsible for the study
The authors.
Funding
Supported by MH CZ - DRO (MMCI, 00209805) and by Ministry of Health of the Czech Republic grant NV18-07-00073.
Disclosure
All authors have declared no conflicts of interest.
48P - Delay of imaging studies in patients with newly diagnosed sarcoma
- Lauren Li (Stanford, United States of America)
Abstract
Background
Delay of diagnosis is common in patients with sarcoma, however, the factors that impact the delay remain incompletely understood.
Methods
We included patients with newly diagnosed sarcoma who were referred to Stanford sarcoma clinic from August 2022 to December 2023 for establishing care, and excluded patients who were referred for second opinion, or transferred care, or after completing surgery, radiation or both.
Results
Among total of 150 eligible patients (37% had Medicare/Medicaid and 63% had private insurance), approximately 40% of patients did not have a visit with their primary care provider within five weeks after the onset of symptoms (pain, palpable mass, etc.) (median 5 weeks). Among patients who were 18 to 30 years old, more than 40% of patients did not have an imaging study performed within five weeks after their first visit with primary care provider (median 2 weeks), this percentage dropped to 25% for the patients who were 30-50 years old (median 1 week), and less than 20% among patients who were older than 50 years (median 1 week). Among 79 patients who had high-grade sarcoma, more than 40% of patients with high-grade sarcoma did not have a visit with their primary care provider within five weeks after the onset of symptoms (pain, palpable mass, etc.) (median 5 weeks), and approximately 20% of the patients did not have their first imaging study performed within five weeks after their visit (median 2 weeks). For all patients, approximately 95% of patients were seen in the sarcoma clinic within five weeks after the referral to sarcoma clinic was initiated. There was no significant difference between insurance type or sex.
Conclusions
Significant percentage of patients with newly diagnosed sarcoma, including those with high-grade sarcoma, did not have an imaging study performed within five weeks after the initial visit with primary care physician, especially the AYA patients who were 18-30 years old.
Legal entity responsible for the study
Stanford University.
Funding
Stanford University.
Disclosure
M. Pan: Financial Interests, Personal, Advisory Board: Aadi Bioscience, Boehringer Ingelheim. All other authors have declared no conflicts of interest.
49P - The impact of unplanned excision ‘whoops surgery’ with or without surgery in outcome of trunk and extremity soft tissue sarcoma patients: A retrospective analysis
- Mohamed Kelany (Cairo, Egypt)
Abstract
Background
Extremity soft tissue sarcomas are rare neoplasms. Because these tumors are usually pseudo-capsulated, many practices are initially thought to be benign and are excised without a proper preoperative imaging, biopsy, or planning by an unwary surgeon. These excisions have termed “Whoops! Procedure” indicating the surprise and distress that the surgeon experiences, after the pathologist reports a malignant neoplasm in a postoperative specimen. We aimed at studying the oncological outcomes of patients undergoing unplanned (whoops) excision for soft-tissue sarcomas (STS) at a tertiary cancer institute.
Methods
This was a retrospective analysis of patients of STS of trunk and extremity from 2017 to 2021. we compared patients who had undergone ‘whoops’ surgery with or without re-surgery versus patients had undergone wide local excision WLE for the oncological outcomes, including overall survival (OS) and disease-free survival (DFS).
Results
After excluding patients with gross residual (R2) and incomplete medical data, Sixty-nine patients were included with median age of 44, patients were divided into two groups: group 1 included 44(63.7%) who underwent whoops surgery and group 2 included 25 (36.3%) underwent WLE. The median follow-up period was 39.6 months. Group 1 were more likely to have smaller tumors (T1-2) 31 patients (70.4%) vs 9 patients (36%) in group 2. Considering margin; R0 was achieved in 4 patients (9.5%) and R1 in 38 patients (90.5%) in group 1 vs R0 in 17 patients (68%) and R1 in 8 patients (32%) in group 2. There were 9 (20.5%) local recurrences in group 1 and 3 (12%) in group 2 (P=0.411). There was no difference in DFS and OS in both groups. The median DFS in group 1 was 21.3 months vs 32.3 months in group 2 (p=0.414), the median OS was 42 months in group 1 vs 38.5 months in group 2 (p=0.974). There was no significant difference in local recurrence in the whoops group between patients who underwent re-excision or not. Also there was no difference in median DFS in re-resection group which was 7.7 months vs 27.5 months in patients who had not undergone re-resection (p=0.06).
Conclusions
Although local recurrence is much more common in the whoops surgery group, re-resection does not seem to affect DFS or OS.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
50P - The difficulties associated with handling bone sarcoma in the northern region of Morocco
- Niama Ghozali (Tangier, Morocco)
Abstract
Background
The management of bone sarcoma has too many challenges in the management of patients with Bone Sarcoma in the region. This study was undertaken to underscore these difficulties and pave the way for improvements in patient management. Identifying and addressing these challenges will contribute to enhancing the overall quality of care for individuals with Bone Sarcoma specially with recent inauguration of the University Hospital of Tangier. Aim of study:To identify and address the shortcomings in the management of bone sarcomas, thereby improving the quality of care.
Methods
This is a retrospective study that included patients diagnosed with STS at the Medical Oncology Department of the university hospital in Tangier between December 2019 and November 2023. Data were collected from medical records using a pre-established sheet form. Statistical analysis was conducted using SPSS.
Results
The study included 44 patients, with a median age of 26 years and 61% being males. Most patients had no personal medical history. The femur was the most common localization (32%). Ewing sarcoma accounted for 47.7%, while osteosarcoma comprised 52.3% (conventional osteosarcoma in 45% of the cases). Immunohistochemistry was performed in 52% of patients, molecular biology in 26% of patients with Ewing sarcoma (It was requested but not done), and histopathological review in only 28%. Staging procedures included MRI and chest CT for almost all patients, bone scintigraphy for 22%, and bone marrow biopsy for 9%. At diagnosis, 70.5% of patients had a local or locally advanced stage, and 29.5% were metastatic. Multidisciplinary team reviews occurred in 13.6% at diagnosis and 27.3% during management. Surgery was performed in 36.4%, exclusively at the university hospital, while radiotherapy was administered in 29.5% (57% palliative). Chemotherapy was given to 100% of metastatic patients and 65% of locally staged patients. The median survival was 36 months.
Conclusions
This study highlights challenges, especially regarding the anatomopathology diagnosis, the review process and molecular biology. There are also challenges related to the availability of extension assessments. In the hope that with the efforts made by the team of the department, we will achieve better results in the future.
Legal entity responsible for the study
M. Amzerin.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.