Global Patient Involvement in Sarcoma Care-A Collaborative Initiative of the Connective Tissue Oncology Society (CTOS) & Sarcoma Patients EuroNet (SPAEN).

Sarcomas are a grouping of rare cancers with a wide variety of histological types that are difficult to diagnose and treat. This leads to many varying challenges not only for sarcoma patients, but also for doctors, researchers, and caregivers. Patient advocacy groups have an important role to play in rare cancers such as sarcomas, especially in collaboration with experts and their medical societies. To this end, patients and patient advocates from Sarcoma Patients EuroNet (SPAEN), a global network of national Sarcoma Patient Advocacy Groups, and medical experts from the scientifically driven Connective Tissue Oncology Society (CTOS) came together on 9 November 2021 at an official ancillary event to the CTOS 2021 Annual Meeting. At the event, representatives of CTOS and SPAEN jointly discussed gaps and challenges in global sarcoma care and management. This resulting position paper highlights the main findings and possible future steps.

Utilization of Interdisciplinary Tumor Boards for Sarcoma Care in Germany: Results from the PROSa Study.

BACKGROUND: Data on institutional structures of sarcoma care in Germany are scarce. The utilization of an interdisciplinary tumor board (IDTB) is an essential part of modern cancer care. We investigated to which extent and when IDTB are used in sarcoma care. We hypothesized that IDTB before treatment initiation were used more often at certified cancer centers and at high-volume centers and that IDTB utilization increased over time. METHODS: From 2017 to 2020 we conducted a prospective cohort study, undertaking major efforts to include the whole spectrum of sarcoma treatment facilities. To analyze potential predictors of IDTB utilization, we calculated multivariable logistic regressions. RESULTS: Patients and survivors (n = 1,309) from 39 study centers (22 tertiary referral hospitals, 9 other hospitals, and 8 office-based practices) participated; 88.3% of the patients were discussed at some stage of their disease in an IDTB (56.1% before treatment, 78% after therapy, and 85.9% in metastatic disease). Hypotheses were confirmed regarding the utilization of IDTB in certified cancer centers (vs. all others: OR = 5.39; 95% CI 3.28-8.85) and the time of diagnosis (2018/2019 vs. until 2013: OR = 4.95; 95% CI 2.67-9.21). CONCLUSION: Our study adds to the evidence regarding the institutional structures of sarcoma care in Germany. Utilization of a tumor board before therapy seems to be in an implementation process that is making progress but is far from complete. Certification is a possible tool to accelerate this development.

Career and Financial Situation of Patients Diagnosed with Soft Tissue Sarcomas.

BACKGROUND: After receiving a cancer diagnosis patients face many challenges. The association between career situation and financial problems caused by cancer has a substantial impact on quality of life (QoL) among cancer patients. Indeed, the QoL such as physical and mental health of cancer patients is lower when the risk of psychological disorders or distress increases, and chances for cancer cure are reduced. Progress in therapeutic intervention allows many cancer patients a social reintegration into their careers. About one third of cancer patients are younger than 65 years, and with the constant increase in work life periods, a cancer diagnosis also presents a financial burden for those affected. OBJECTIVES: The main objective of this study was to analyse the social QoL in the context of factors related to career and financial situation among patients diagnosed with soft tissue sarcomas (STS). METHODS: A descriptive non-experimental research design was used to conduct a cross-sectional survey over a period of 6 months, between May and November 2016, in collaboration with the Sarcoma Unit at the Mannheim University Medical Centre, Mannheim, Germany, the patient organisation "Das Lebenshaus e.V.," and the German Pension Insurance Hessen (Deutsche Ren-tenversicherung: DRV Hessen)/Pension Fund. We analysed data of 30 patients diagnosed with STS using self-outcome questionnaires in combination with retirement insurance data from the date of first diagnosis up to 3 years afterwards. Out of 280 questionnaires, we received 86 completed forms, of which 56 were excluded. The remaining questionnaires of 30 patients were analysed according to self-determined outcomes and included a calculation of the financial changes caused by the disease. Only patients covered by pension insurance were included in the study. RESULTS: Thirty patients (24 women) whose median age at first diagnosis was 48.7 years (range 31-61 years) were included in the analysis. The average unemployment rate was 8.8 months, and for 67% (20 patients) the employment situation changed after the period of unemployment. Eight patients requested a retirement pension (reduced income insurance), 4 patients reduced their weekly working hours, and 3 patients lost their jobs due to complications of the disease. The data analysis revealed that, among these patients, one benefited from an income increase of about 24%, another one received a regular old-age pension, and 4 patients reported reduced income for other reasons. In total, mean income has been reduced by 26%. Considering only the 8 patients who applied for a pension, partial or total unemployment benefits resulted in an average loss of income of up to 62%. CONCLUSIONS: Reduced ability to work may cause severe financial problems for those affected by the diagnosis of STS. We found an average income reduction of 26%, for those requesting pension payments of 62%. This eventually relates to a higher risk of reduced wealth and may lower the patients' social standing.

Working to improve the management of sarcoma patients across Europe: a policy checklist.

BACKGROUND: The Sarcoma Policy Checklist was created by a multidisciplinary expert group to provide policymakers with priority areas to improve care for sarcoma patients. MAIN BODY: This paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas. It aims to highlight key gaps in research, policy and practice, as well as ongoing initiatives that may impact the future care of sarcoma patients in different European countries. A pragmatic review of the published and web-based literature was undertaken. Telephone interviews were conducted in each country with clinical and patient experts to substantiate findings. Research findings were discussed within the expert group and developed into five core policy recommendations. The five identified priority areas were: the development of designated and accredited centres of reference; more professional training; multidisciplinary care; greater incentives for research and innovation; and more rapid access to effective treatments. Most of the countries studied have ongoing initiatives addressing many of these priorities; however, many are in early stages of development, or require additional funding and resources. CONCLUSION: Gaps in access to quality care are particularly concerning in many of Europe's lower-resourced countries. Equitable access to information, clinical trials, innovative treatments and quality specialist care should be available to all sarcoma patients. Achieving this across Europe will require close collaboration between all stakeholders at both the national and European level.

ECCO Essential Requirements for Quality Cancer Care: Soft Tissue Sarcoma in Adults and Bone Sarcoma. A critical review.

BACKGROUND: ECCO essential requirements for quality cancer care (ERQCC) are checklists and explanations of organisation and actions that are necessary to give high-quality care to patients who have a specific tumour type. They are written by European experts representing all disciplines involved in cancer care. ERQCC papers give oncology teams, patients, policymakers and managers an overview of the elements needed in any healthcare system to provide high quality of care throughout the patient journey. References are made to clinical guidelines and other resources where appropriate, and the focus is on care in Europe. Sarcoma: essential requirements for quality care • Sarcomas - which can be classified into soft tissue and bone sarcomas - are rare, but all rare cancers make up more than 20% of cancers in Europe, and there are substantial inequalities in access to high-quality care. Sarcomas, of which there are many subtypes, comprise a particularly complex and demanding challenge for healthcare systems and providers. This paper presents essential requirements for quality cancer care of soft tissue sarcomas in adults and bone sarcomas. • High-quality care must only be carried out in specialised sarcoma centres (including paediatric cancer centres) which have both a core multidisciplinary team and an extended team of allied professionals, and which are subject to quality and audit procedures. Access to such units is far from universal in all European countries. • It is essential that, to meet European aspirations for high-quality comprehensive cancer control, healthcare organisations implement the requirements in this paper, paying particular attention to multidisciplinarity and patient-centred pathways from diagnosis and follow-up, to treatment, to improve survival and quality of life for patients. CONCLUSION: Taken together, the information presented in this paper provides a comprehensive description of the essential requirements for establishing a high-quality service for soft tissue sarcomas in adults and bone sarcomas. The ECCO expert group is aware that it is not possible to propose a 'one size fits all' system for all countries, but urges that access to multidisciplinary teams is guaranteed to all patients with sarcoma.