WP leader: German Cancer Society, Germany (Simone Wesselmann)
Outputs and deliverables
Report on the basis of the analysis of data from the survey on National Cancer Control Programmes/Cancer documents in EU
- Open document (PDF file, 1.8 MB)
National Cancer Control Programmes (NCCPs) are key documents in the field of cancer control; health systems can respond to population needs regarding cancer only through adequate planning. A survey on NCCPs and related cancer documents in EU Member States, some EEA countries and EU candidate countries which was carried out in 2018 provided valuable information regarding current situation in the field of NCCPs in Europe and regarding the presence of some key elements (quality indicators, patient reported outcome measures-PROMs, patient pathways, implementation of Comprehensive Cancer Care Networks-CCCNs) that quality NCCPs/Cancer Documents should include. On the basis of the answers to the survey, a generic list of evidence based tools for efficient stewardship and measure of effects of the cancer control will be prepared.
Report on the inclusion of Patient Pathways, Quality Indicators, PROMS, and the implementation of Comprehensive Cancer Care Networks in the updates of National Cancer Control Programmes
- Open document (PDF file, 420 kB)
The recommendations with respective performance measures that are presented in the document are intended to improve the European NCCPs which are key documents in the field of cancer control. These clear recommendations are also paving the way for the new version of the European Guide for Quality National Cancer Control Programmes which was published in 2015 in the frame of the project European Partnership for the Action Against Cancer Joint Action (EPAAC JA) and was defined as a living document.
Report on the basis of the literature review and terminological assessment of the terms „Governance/Stewardship in/of Cancer Care“
- Open document (PDF file, 630 kB)
In the scientific literature in the field of cancer care, especially in the literature concerning national and regional cancer control programmes, the terms governance and stewardship in/of cancer care are frequently used, but are usually not explained or defined. In the frame of the work of iPAAC JA definitions of the mentioned terms were developed on the basis of the literature review and work within in the working group, where the definitions were discussed, supplemented and addopted by European experts on cancer from different institutions, academia, Ministries of Health as well as the representatives of cancer organisations, cancer institutes and cancer patients. The definitions will be particularly useful in the field of national cancer control programmes and will facilitate the understanding of the leadership tasks in the area of cancer care and cancer control.
Definition and methodical support for patient pathways in Comprehensive Cancer Care Networks (CCCNs)
- Complete description
- Systematic literature review (PDF file, 420 kB)
- Template for tumour-specific patient pathways: example of colorectal cancer (PDF file, 4.3 MB)
- Template for tumour-specific patient pathways: example of pancreatic cancer (PDF file, 2.5 MB)
- Scholarly paper 1: Richter and Schlieter. 14th International Conference on Wirtschaftsinformatik 2019 (PDF file, 300 kB)
- Scholarly paper 2: Richter and Schlieter. Forum 2019; 34 (PDF file, 140 kB)
- Scholarly paper 3: Richter and Schlieter. 15th International Conference on Wirtschaftsinformatik 2020 (PDF file, 900 kB)
- Scholarly paper 4: Richter and Schlieter. 54th Hawaii International Conference on System Sciences 2021: 3753–3763 (PDF file, 900 kB)
- Scholarly paper 5: Richter et al. Pacific Asia Conference on Information Systems 2021: 32
Patient pathways are recognised as valuable approach for care coordination, optimisation, patient information and the implementation of guideline recommendations. To practically support their application in CCCNs, a patient pathway method was developed based on the findings of a systematic literature review and user requirements collected. The method applies a patient pathway template approach that allows the development and implementation of evidence-based tumour-specific patient pathway templates. Functioning as generic patterns, such templates can be adapted to the individual conditions and environments of specific CCCNs. The patient pathway method was used to develop and test patient pathway templates for colorectal and pancreatic cancer care in CCCNs. Furthermore, to create a common reference point for a uniform understanding of the patient pathway term, a definition was developed and agreed upon.
Systematic review of the Quality Indicators (QIs) to evaluate the CCCN approach in the management of oncologic patients
- Open document (PDF file, 850 kB)
A systematic literature review was performed with two aims. First, to identify quality indicators (Qis) already implemented in clinical oncological practice. Second, to retrieve the description of the methodology processes used to derive these QIs.
Methodology for defining quality indicators (QI) in order to monitor and improve oncological care within a Comprehensive Cancer Care Network (CCCN) – the iPAAC Evaluation Tool for QIs in oncology
- Open document (PDF file, 190 kB)
Since the systematic review provided only a limited number of implemented indicators with reported results, an additional search was conducted on websites of European quality assurance institutions in oncology. The search focused on colorectal and pancreatic carcinoma because the work within WP 10 concentrated on these two tumour entities to ensure synergies with other iPAAC work packages and European initiatives. Based on the results of the reported methodology in publications identified by the systematic review and the additional search on homepages of national and international quality assurance organizations, the “iPAAC evaluation tool for QI” (iET-QI) was developed to assess the identified QIs. The methodological steps are reported according to the reporting standards for guideline-based performance measures of the Guideline International Network (GIN)
Quality Indicators for Colorectal and Pancreatic Cancer to monitor and improve oncological care within Comprehensive Cancer Care Networks (CCCN)
- Open document (PDF file, 270 kB)
The iET-QI-methodology was used to create the final set of 40 quality indicators for the treatment and care of colorectal and pancreatic cancer. This set of indicators will be implemented in the two pilot CCCNs in the course of WP 10 with the aim of pilot testing the validity of this path for the assessment of quality of care within CCCNs.
Implementation of patient-reported outcome assessment in routine cancer care – a systematic review of multicentric programs in Europe
- Open document (PDF file, 460 kB)
- Scholarly paper: Scheibe et al. Z Evid Fortbild Qual Gesundhwes. 2020;156-157:11-23
This report attempts to add to the existing body of knowledge regarding the implementation of PROMs into routine cancer care by conducting a systematic review to identify PROM programs that allow for both major purposes of PROM assessment in routine cancer care: 1) identification of an individual patient’s symptoms and function to assist in communicating and clinical decision making as well as monitoring his or her outcome and 2) use of group data in quality improvement initiatives including the benchmarking of providers or sites with respect to outcomes. A systematic literature research was conducted to identify existing PROM programs in routine cancer care that allow for decision-making of individual cancer patients as well as provider comparisons. The identified studies revealed relevant information on existing PROM programs and gave valuable insight into issues that need to be considered when setting up such an infrastructure. Some critical issues, however, were hardly addressed, among them costs, staff resources and methods of reporting and responding.
Framework for the implementation of Patient Reported Outcome Measures (PROMs) in routine cancer care
- Open document (PDF file, 140 kB)
Following the literature review a framework for implementation of Patient Reported Outcome Measures (PROMS) in routine cancer care was developed to enable providers to better serve individual patients (e. g.: treatment of impaired quality of life) and to enable cancer centers to compare their own patient reported outcomes data with that of others (benchmarking). The recommendations were deduced from the literature review under-taken by the same working group, existing manuals on PROM implementation issued by ISOQOL and the EORTC Quality of life Group, as well as expert opinions. The recommendations are meant to support Comprehensive Cancer Care Networks in implementing PROMs in routine care. They do not include recommendations related to necessary earlier steps, like the development and psychometric testing of PROM instruments.
Implementation of Comprehensive Cancer Care Networks
- Set of Standards for CCCN (PDF file, 470 kB)
- Set of Standards for Colorectal and Pancreatic Cancer Care (PDF file, 360 kB)
- Supporting Document for the Set of Standards for CCCNs (PDF file, 90 kB)
- European Framework for the certification of CCCNs in the course of iPAAC (PDF file, 200 kB)
Comprehensive Cancer Care networks (CCCN) consist of multiple units belonging to different institutions dedicated to research, prevention, diagnosis, treatment, follow-up, supportive and palliative care and rehabilitation for the benefit of cancer patients and cancer survivors [Albreht et al 2017]. Within the network, the experts work together in a multidisciplinary manner in tumour-specific management groups or centres. The cooperation takes place, for example, in tumour boards and on the basis of cancer-specific patient pathways that are binding for the entire network. The objective of a CCCN is to provide comprehensive cancer care to all the people living in a certain geographic area, thus pursuing equality and the improvement of outcomes and quality [Albreht et al 2017].
The quality of care is made transparent through quality indicators, which are used for a continuous quality improvement process. In addition to the QIs, patient-reported outcomes, as a central parameter of outcome quality, are another instrument with which the quality in the CCCN as a whole and at the level of the care providers can be measured, compared and improved.
Within task 10.5, a tumour-specific and a generic set of standards (SoS) for CCCNs were developed, which include the previously mentioned instruments developed in WP10 task 2-5 and goals. In addition, a framework was defined to evaluate and promote the implementation of the SoS with a certification process. The overall concept was successfully implemented in pilot CCCNs in two member states (Poland and Germany).
WP10 description and objectives
Governance means different things on different levels and has different implications depending on the perspective. That is why it is a key concept to be addressed in a systematic way. A conceptual model is needed in order to describe and better understand governance in each country. At this purpose a valid reference model, as also suggested by the CANCON-Guide, is the stewardship model proposed by WHO. Governance here is to be understood in this conceptual framework.
The goal of this work package is to further develop practical instruments ensuring a standardized integrated and comprehensive oncological care in all European member states which is tumour-specific and delivers all-encompassing high-quality care to all patients.
The aim of the work package is to develop practical instructions for the successful governance and steering of cancer care in all member states. The instructions will be based on the recommendations developed during CanCon.
Specific objectives are:
- Analysis of NCCP’s according to the incorporation and implementation of the core steering instruments
- Development of a methodology for deriving quality indicators and for patient pathways
- Development of a set of generic and tumour-specific requirements for the setup of CCCN´s. This set will be the basis for member state specific adaptations.
- Analysis of existing models of PROM &PREM collection and development of a framework for the implementation of PROMs & PREMs in routine care
- Development of a framework for the implementation and monitoring of CCCN’s
- Practical application and implementation of the developed templates and framework in a CCCN.
Background and previous work
- Cancon Guide, Chapter 5: Integrated cancer control: the case for comprehensive cancer care networks (CCCN) (PDF file, 210 kB)
- CANCON JA: Policy Paper on National Cancer Control Programmes (NCCPs)/Cancer Documents in Europe (PDF file, 80 kB)
- EPAAC JA: European Guide for Quality National Cancer Control Programmes (PDF file, 1.1 MB)
- EPAAC JA: Chapter 9 in the book: Boosting Innovation and Cooperation in European Cancer Control: “From ‘on paper’ to ‘into action’: development of National Cancer Control Programmes in the EU” (PDF file, 3.2 MB)
- EPAAC JA: National Cancer Control Programmes: Analysis of Primary Data from Questionnaires: FINAL PRELIMINARY REPORT (PDF file, 1.4 MB)
- EPAAC JA: The development of European Guide for Quality National Cancer Control Programmes (PDF file, 190 kB)