Long-term survival for lymphoid neoplasms and national health expenditure (EUROCARE-6): a retrospective, population-based study.

BACKGROUND: Management of lymphoid malignancies requires substantial health system resources. Total national health expenditure might influence population-based lymphoid malignancy survival. We studied the long-term survival of patients with 12 lymphoid malignancy types and examined whether different levels of national health expenditure might explain differences in lymphoid malignancy prognosis between European countries and regions. METHODS: For this observational, retrospective, population-based study, we analysed the EUROCARE-6 dataset of patients aged 15 or older diagnosed between 2001 and 2013 with one of 12 lymphoid malignancies defined according to International Classification of Disease for Oncology (third edition) and WHO classification, and followed up to 2014 (Jan 1, 2001-Dec 31, 2014). Countries were classified according to their mean total national health expenditure quartile in 2001-13. For each lymphoid malignancy, 5-year and 10-year age-standardised relative survival (ASRS) was calculated using the period approach. Generalised linear models indicated the effects of age at diagnosis, gender, and total national health expenditure on the relative excess risk of death (RER). FINDINGS: 82 cancer registries (61 regional and 21 national) from 27 European countries provided data eligible for 10-year survival estimates comprising 890 730 lymphoid malignancy cases diagnosed in 2001-13. Median follow-up time was 13 years (IQR 13-14). Of the 12 lymphoid malignancies, the 10-year ASRS in Europe was highest for hairy cell leukaemia (82·6% [95% CI 78·9-86·5) and Hodgkin lymphoma (79·3% [78·6-79·9]) and lowest for plasma cell neoplasms (29·5% [28·9-30·0]). RER increased with age at diagnosis, particularly from 55-64 years to 75 years or older, for all lymphoid malignancies. Women had higher ASRS than men for all lymphoid malignancies, except for precursor B, T, or natural killer cell, or not-otherwise specified lymphoblastic lymphoma or leukaemia. 10-year ASRS for each lymphoid malignancy was higher (and the RER lower) in countries in the highest national health expenditure quartile than in countries in the lowest quartile, with a decreasing pattern through quartiles for many lymphoid malignancies. 10-year ASRS for non-Hodgkin lymphoma, the most representative class for lymphoid malignancies based on the number of incident cases, was 59·3% (95% CI 58·7-60·0) in the first quartile, 57·6% (55·2-58·7) in the second quartile, 55·4% (54·3-56·5) in the third quartile, and 44·7% (43·6-45·8) in the fourth quartile; with reference to the European mean, the RER was 0·80 (95% CI 0·79-0·82) in the first, 0·91 (0·90-0·93) in the second, 0·94 (0·92-0·96) in the third, and 1·45 (1·42-1·48) in the fourth quartiles. INTERPRETATION: Total national health expenditure is associated with geographical inequalities in lymphoid malignancy prognosis. Policy decisions on allocating economic resources and implementing evidence-based models of care are needed to reduce these differences. FUNDING: Italian Ministry of Health, European Commission, Estonian Research Council.

Out-of-pocket costs sustained in the last 12 months by cancer patients: an Italian survey-based study on individual expenses between 2017 and 2018.

PURPOSE: Out of Pocket costs (OOP) sustained by cancer patients also in public NHS contribute to disease-related financial toxicity. Aim of the study was to investigate the amount and the types of OOP sustained by Italian cancer patients for care services. METHODS: A sample survey was conducted by FAVO in December 2017-June 2018, in 39 adhering hospitals and 1289 patients diagnosed from 1985 to 2018, by standardized questionnaire inquiring on: yearly expenditure by cancer service, age, year of diagnosis, disease phase, cancer site, sex, marital status, education, residence. Univariate and multivariable regression analyses were performed between OOP and each variable. Multilevel mixed-effects negative binomial regression was used to assess the combined effects of patients characteristics on the differences in acquiring health services. RESULTS: The yearly average OOP was 1841.81€, with the highest values for transports (359.34€) and for diagnostic examinations (259.82€). Significantly higher OOP were found in North and Centre than South and Islands (167.51 vs. 138.39). In the fully adjusted multivariable analysis, the variables significantly associated with higher than reference expenditure were: medium/high education (OR 1.22 [1.05-1.42], upper gastrointestinal tract cancer (OR 1.37 [1.06-1.77]), disease phase of treatments for cancer progression or pain therapy (OR 1.59 [1.30-1.93]). CONCLUSION: Italian cancer patients in 2018 sustained OOP quite similar to those measured in 2012 to supplement NHS services. The main component of the OOP costs were diagnostic examination and transportation. The NHS should pay attention to potentiate its ability to answer unmet needs of patients with advanced cancer who are the most fragile ones. IMPLICATIONS FOR CANCER SURVIVORS: Reinforcing the services where the main OOP expenses are located can help in promoting public health actions and reduce socio-economic needs that could compromise the receipt of optimal care along the whole disease course, from diagnosis to rehabilitation.

Analysis of incidence, mortality and survival for pancreatic and biliary tract cancers across Europe, with assessment of influence of revised European age standardisation on estimates.

BACKGROUND: Pancreatic (PC) and biliary tract (BTC) cancers have higher incidence and mortality in Europe than elsewhere. We analysed time-trends in PC/BTC incidence, mortality, and survival across Europe. Since the European standard population (ESP) was recently revised to better represent European age structure, we also assessed the effect of adopting the revised ESP to age-standardise incidence and mortality data. METHODS: We analysed PCs/BTCs (≥15 years) diagnosed in 2000-2007 and followed-up to end of 2008, in 29 European countries across five regions: UK/Ireland, and northern, central, southern, and eastern Europe. Incidence, mortality, and 5-year relative survival were compared between regions, by age, sex, and period of diagnosis. RESULTS: Variation in age-standardised incidence (PC 12-15/100,000; BTC 2-6) and mortality (PC 10-14; BTC 1-5) was modest. Eastern Europe had highest incidence and mortality, and lowest survival; northern and southern Europe had highest age-specific incidence (most age groups) for PC and BTC, respectively. Incidence and survival increased slightly from 2000 to 2007, particularly in elderly patients and women, but survival remained poor (≤8% for PC; 13-18% for BTC). Use of the revised ESP for age-standardisation did not impact European regional incidence and mortality rankings. CONCLUSION: Poor survival for PC and BTC, together with increasing incidence, indicate that action is required. Countries with higher incidence had higher risk factor frequency, suggesting that prevention initiatives targeting risk factors should be promoted. Improvements in diagnosis and treatment are also required. Our results provide a baseline from which to monitor evolution of the PC/BTC burden in Europe.

Out-of-pocket costs for cancer survivors between 5 and 10 years from diagnosis: an Italian population-based study.

PURPOSE: To illustrate the out-of-pocket (OOP) costs incurred by a population-based group of patients from 5 to 10 years since their cancer diagnosis in a country with a nationwide public health system. METHODS: Interviews on OOP costs to a sample of 5-10 year prevalent cases randomly extracted from four population-based cancer registries (CRs), two in the north and two in the south of Italy. The patients' general practitioners (GPs) gave assurance about the patient's physical and psychological condition for the interview. A zero-inflated negative binomial model was used to analyze OOP cost determinants. RESULTS: Two hundred six cancer patients were interviewed (48 % of the original sample). On average, a patient in the north spent €69 monthly, against €244 in the south. The main differences are for transport, room, and board (TRB) to reach the hospital and/or the cancer specialist (north €0; south €119). Everywhere, OOP costs without TRB costs were higher for patients with a low quality of life. CONCLUSIONS: Despite the limited participation, our study sample's characteristics are similar to those of the Italian cancer prevalence population, allowing us to generalize the results. The higher OOP costs in the south may be due to the scarcity of oncologic structures, obliging patients to seek assistance far from their residence. Implications for cancer survivors Cancer survivors need descriptive studies to show realistic data about their status. Future Italian and European descriptive studies on cancer survivorship should be based on population CRs and involve GPs in order to approach the patient at best.

Survival variations by country and age for lymphoid and myeloid malignancies in Europe 2000-2007: Results of EUROCARE-5 population-based study.

BACKGROUND: Significant advances in the management of patients with lymphoid and myeloid malignancies entered clinical practice in the early 2000's. The EUROCARE-5 study database provides an opportunity to assess the impact of these changes at the population level by country in Europe. We provide survival estimates for clinically relevant haematological malignancies (HM), using the International Classification of Diseases for Oncology 3, by country, gender and age in Europe. METHODS: We estimated age-standardised relative survival using the complete cohort approach for 625,000 adult patients diagnosed in 2000-2007 and followed up to 2008. Survival information was provided by 89 participating cancer registries from 29 European countries. Mean survival in Europe was calculated as the population weighted average of country-specific estimates. RESULTS: On average in Europe, 5-year relative survival was highest for Hodgkin lymphoma (81%; 40,625 cases), poorest for acute myeloid leukaemia (17%; 57,026 cases), and intermediate for non-Hodgkin lymphoma (59%; 329,204 cases), chronic myeloid leukaemia (53%; 17,713 cases) and plasma cell neoplasms (39%; 94,024 cases). Survival was generally lower in Eastern Europe and highest in Central and Northern Europe. Wider between country differences (>10%) were observed for malignancies that benefited from therapeutic advances, such as chronic myeloid leukaemia, chronic lymphocytic leukaemia, follicular lymphoma, diffuse large B-cell lymphoma and multiple myeloma. Lower differences (<10%) were observed for Hodgkin lymphoma. CONCLUSIONS: Delayed or reduced access to innovative and appropriate therapies could plausibly have contributed to the observed geographical disparities between European regions and countries. Population based survival by morphological sub-type is important for measuring outcomes of HM management. To better inform quality of care research, the collection of detailed clinical information at the population level should be prioritised.

Policy statement on multidisciplinary cancer care.

BACKGROUND: Cancer care is undergoing an important paradigm shift from a disease-focused management to a patient-centred approach, in which increasingly more attention is paid to psychosocial aspects, quality of life, patients' rights and empowerment and survivorship. In this context, multidisciplinary teams emerge as a practical necessity for optimal coordination among health professionals and clear communication with patients. The European Partnership for Action Against Cancer (EPAAC), an initiative launched by the European Commission in 2009, addressed the multidisciplinary care from a policy perspective in order to define the core elements that all tumour-based multidisciplinary teams (MDTs) should include. To that effect, a working group conference was held in January 2013 within the EPAAC Work Package 7 (on Healthcare) framework. METHODS: The consensus group consisted of high-level representatives from the following European scientific societies, patient associations and stakeholders: European CanCer Organisation (ECCO), European SocieTy for Radiology & Oncology (ESTRO), European Society for Medical Oncology (ESMO), European Society of Surgical Oncology (ESSO), International Society of Geriatric Oncology (SIOG), European Association for Palliative Care (EAPC), European Oncology Nursing Society (EONS), International Psycho-Oncology Society (IPOS),European Cancer Patient Coalition (ECPC), EuropaColon, Europa Donna - The European Breast Cancer Coalition, Association of European Cancer Leagues (ECL), Organisation of European Cancer Institutes (OECI), EUSOMA - European Society of Breast Cancer Specialists, European Hospital and Healthcare Federation (HOPE) and EPAAC Work Packages 5 (Health promotion and prevention), 7, 8 (Research), 9 (Information systems) and 10 (Cancer plans). A background document with a list of 26 core issues drawn from a systematic review of the literature was used to guide the discussion. Five areas related to MDTs were covered: care objectives, organisation, clinical assessment, patients' rights and empowerment and policy support. Preliminary drafts of the document were widely circulated for consultation and amendments by the working group before final approval. RESULTS: The working group unanimously formulated a Policy Statement on Multidisciplinary Cancer Care to define the core elements that should be implemented by all tumour-based MDTs. This document identifies MDTs as the core component in cancer care organisation and sets down the key elements to guide changes across all European health systems. CONCLUSION: MDTs are an essential instrument of effective cancer care policy, and their continued development crucial to providing patients the care they need and deserve. While implementation must remain in local hands, European health systems can still benefit from having a basis for an effective multidisciplinary model of cooperation. This policy statement is intended to serve as a reference for policymakers and healthcare providers who wish to improve the services currently provided to the cancer patients whose lives and well-being depend on their action.

Regional inequalities in cancer care persist in Italy and can influence survival.

BACKGROUND: Population-based cancer registry studies of care patterns can help elucidate reasons for the marked geographic variation in cancer survival across Italy. The article provides a snapshot of the care delivered to cancer patients in Italy. METHODS: Random samples of adult patients with skin melanoma, breast, colon and non-small cell lung cancers diagnosed in 2003-2005 were selected from 14 Italian cancer registries. Logistic models estimated odds of receiving standard care (conservative surgery plus radiotherapy for early breast cancer; surgery plus chemotherapy for Dukes C colon cancer; surgery for lung cancer; sentinel node biopsy for >1mm melanoma, vs. other treatment) in each registry compared to the entire sample (reference). RESULTS: Stage at diagnosis for breast, colon and melanoma was earlier in north/central than southern registries. Odds of receiving standard care were lower than reference in Sassari (0.68, 95%CI 0.51-0.90) and Napoli (0.48, 95%CI 0.35-0.67) for breast cancer; did not differ across registries for Dukes C colon cancer; were higher in Romagna (3.77, 95%CI 1.67-8.50) and lower in Biella (0.38, 95%CI 0.18-0.82) for lung cancer; and were higher in Reggio Emilia (2.37, 95%CI 1.12-5.02) and lower in Ragusa (0.27, 95%CI 0.14-0.54) for melanoma. CONCLUSIONS: Notwithstanding limitations due to variations in the availability of clinical information and differences in stage distribution between north/central and southern registries, our study shows that important disparities in cancer care persist across Italy. Thus the public health priority of reducing cancer survival disparities will not be achieved in the immediate future.

Differences in stage and treatment of breast cancer across Italy point to inequalities in access to and availability of proper care.

AIMS AND BACKGROUND: Population-based cancer registry studies of patterns of care can help elucidate reasons for differences in breast cancer survival across Italy documented by previous studies. The aims of the present study were to investigate across-country variation in stage at presentation and standard care for breast cancer cases diagnosed in Italy in the early 2000s. METHODS: Samples of adult (≥ 15 years) women with breast cancer diagnosed in 2003-2005 were randomly selected in 9 Italian cancer registries. Logistic regression models were used to estimate the odds of receiving breast-conserving surgery plus radiotherapy (BCS + RT) in each cancer registry, age group, and disease stage category compared with the entire sample (reference); the z test was used to evaluate differences in proportions of stage at diagnosis, employment of chemotherapy in node-positive (N+) disease, and use of endocrine treatment in estrogen-receptor positive (ER+) and negative (ER-) tumors across Italy. RESULTS: Stage at diagnosis was earlier in northern/central registries than in southern areas. Compared with the reference, the odds of receiving BCS + RT was significantly lower in Trapani, Sassari and Naples (southern Italy) after adjusting for age and stage at diagnosis. Among N+ patients, 73% received adjuvant chemotherapy (range, 51% [Biella, northern Italy] to 87% [Ragusa, southern Italy]). Eighty percent of ER+ cancers (range, 50% [Biella, northern Italy] to 97% [Ragusa, southern Italy]) and 18% of ER- cancers (range, 6% [Modena, northern Italy] to 28% [Umbria, central Italy]) were treated with hormonal therapy. CONCLUSIONS: Disparities in stage distributions and conservative surgery in breast cancer persist across Italy. On a positive note, we found lower variations in the use of systemic treatment between Italian regions.

Comprehensive cancer control-research & development: knowing what we do and doing what we know.

Comprehensive cancer control is defined as an integrated and coordinated approach to reducing cancer incidence, morbidity, and mortality across the cancer control continuum from primary prevention to end-of-life care. This approach assumes that when the public sector, non-governmental organizations, academia, and the private sector share with each other their skills, knowledge, and resources, a country can take advantage of all its talents and resources to more quickly reduce the burden of cancer for all its population. One critical issue for comprehensive cancer control is the extent to which the private sector can contribute to cancer prevention and control programs and policies that have historically been lead by the public health sector, and similarly how can the public sector increase its investment and involvement in clinical research and practice issues that are largely driven by the private sector worldwide? In addition, building capacity to integrate research that is appropriate to the culture and context of the population will be important in different settings, in particular research related to cancer control interventions that have the capacity to influence outcomes. To whatever extent cancer control research is ultimately funded through the private and public sectors, if investments in research discoveries are ultimately to benefit the populations that bear the greatest burden of disease, then new approaches to integrating the lessons learned from science with the lessons learned from service (public health, clinical, and public policy) must be found to close the gap between what we know and what we do. Communities of practice for international cancer control, like the ones fostered by the first three International Cancer Control Congresses, represent an important forum for knowledge exchange opportunities to accelerate the translation of new knowledge into action to reduce the burden of cancer worldwide.

Survival for eight major cancers and all cancers combined for European adults diagnosed in 1995-99: results of the EUROCARE-4 study.

BACKGROUND: EUROCARE is the largest population-based cooperative study on survival of patients with cancer. The EUROCARE project aims to regularly monitor, analyse, and explain survival trends and between-country differences in survival. This report (EUROCARE-4) presents survival data for eight selected cancer sites and for all cancers combined, diagnosed in adult (aged >/=15 years) Europeans in 1995-99 and followed up until the end of 2003. METHODS: We analysed data from 83 cancer registries in 23 European countries on 2 699 086 adult cancer cases that were diagnosed in 1995-99 and followed up to December, 2003. We calculated country-specific and mean-weighted age-adjusted 5-year relative survival for eight major cancers. Additionally, case-mix-adjusted 5-year survival for all cancers combined was calculated by countries ranked by total national expenditure on health (TNEH). Changes to survival were analysed relative to cases diagnosed in 1990-94. FINDINGS: Mean age-adjusted 5-year relative survival for colorectal (53.8% [95% CI 53.3-54.1]), lung (12.3% [12.1-12.5]), breast (78.9% [78.6-79.2]), prostate (75.7% [75.2-76.2]), and ovarian (36.3% [35.7-37.0]) cancer was highest in Nordic countries (except Denmark) and central Europe, intermediate in southern Europe, lower in the UK and Ireland, and worst in eastern Europe. Survival for melanoma (81.6% [81.0-82.3]), cancer of the testis (94.2% [93.4-95.0]), and Hodgkin's disease (80.0% [79.0-81.0]) varied little with geography. All-cancer survival correlated with TNEH for most countries. Denmark and UK had lower all-cancer survival than countries with similar TNEH; Finland had high all-cancer survival, but moderate TNEH. Survival increased and intercountry survival differences narrowed between the data for 1990-94 and 1995-99 for, notably, Hodgkin's disease (range 66.1-82.9 [IQR 72.2-78.6] vs 74.0-83.9 [78.6-81.9]), colorectal (29.4-56.7 [45.8-54.1] vs 38.8-59.7 [50.7-57.5]), and breast (61.7-82.7 [72.3-78.3] vs 69.3-87.6 [76.6-82.7]) sites. INTERPRETATION: Increases in survival and decreases in geographic differences over time, which are mainly due to improvements in health-care services in countries with poor survival, might indicate better cancer care. Wealthy countries with high TNEH generally had good cancer outcomes, but those with conspicuously worse outcomes than those with similar TNEH might not be allocating health resources efficiently.