MedicaMundi

T.H. Brümmendorf, A. Köchel, J. Panse - Euregional comprehensive Cancer Center, Universitätsklinikum Aachen, Aachen, Germany.

Figure 1. University Hospital Aaachen. ©UKA.

Every year, more than 450,000 people in Germany develop cancer, and 216,000 die, making cancer the second most common cause of death after heart disease. Because people are living longer and cancer is mainly a disease of older people, the number of new cases is expected to increase by 30% by 2050.

With about 64,370 new cases per year, prostate cancer is now the most common cancer in men, while 59,510 women develop breast cancer. However, cancer is not confined to older people. Every year, approximately 1,800 children and adolescents under 15 years develop some form of cancer.

In order to optimize the care of cancer patients, the Deutsche Krebshilfe (German Cancer Aid) organization has successfully adopted the US system of NCI-designated Cancer Centers as a role model.

The Euroregional comprehensive Cancer Center

The Euroregional comprehensive Cancer Center Aachen (ECCA) was founded on March 25th 2010 as a joint  interdisciplinary establishment of the Universitätsklinik Aachen (University Hospital Aachen) and the Medical Faculty of the Rheinisch-Westfälischen Hochschule  (RWTH Aachen University) [1]. The main goal is to provide a comprehensive care service in Aachen, with the hope that it will expand to cover the Rhine-Meuse-North Euroregion. The Euroregion is a cross-border administrative region covering parts of Germany, Holland and Belgium.

The Center embodies the latest on modern care structures in oncology, providing comprehensive interdisciplinary care comprising diagnosis, therapy, preparatory and aftercare, as well as basic, translational and clinical research into the various forms of cancer as a basis for new treatment approaches. The aim is to eventually gain recognition by the Deutsche Krebshilfe as a Center of Excellence in the future.

Modern care structures in oncology comprise several key elements. In the first place, we have to enable and facilitate interdisciplinary diagnosis and treatment of cancer patients. This requires a centralized unit that provides a single entry port for patients and allows the patients to be seen and taken care of by doctors from all of the individual specialties involved in the care of the patient.

In the second place, we have to ensure the quality of care by establishing locally applicable interdisciplinary patient treatment pathways that are based on established guidelines, such as those of the NCCN [2], DKG [3], or DGHO [4], which allow treatment decisions to be made within the pathway. In the context of an academic cancer center this also includes acquisition of information for subsequent study and translation of research perspectives such as tissue banking.

Patients can benefit from a multidisciplinary approach. Various studies show that the benefit in overall-survival is around 10%, depending on the tumor type. This is far better than the recent results of new drugs or technical achievements within treatments, and is accomplished simply by including each and every specialty in the diagnosis and treatment. Patients can further benefit from a multidisciplinary approach if interdisciplinary communication and discussion leads to a decision where a certain treatment is deemed not necessary. Patients then benefit from being spared some stressful treatment and, in some cases, significant side effects.

Another very important aspect is that patient decision-making with respect to invasive diagnostic procedures in particular, but also treatment, needs to be discussed in interdisciplinary tumor boards that include all specialties involved in patient care, and that allow open discussion of the way in which diagnosis and treatment are going to be achieved and pursued in individual patient cases.

One of the major problems with respect to tumor board management is that, with the exception of some dedicated cancer centers, it does yet represent the current standard of care. That means that items of information that are being submitted for tumor board decision making and also the mode of documentation of tumor board decisions are not standardized and in most cases are neither based on established guidelines nor are they quality assured. Furthermore, there is no standardized procedure for recording tumor board decisions in such a way that one can re-evaluate patients a year later to check whether the decisions have actually being followed.

Standardization of tumor boards is very important in order to achieve reliable and structured information. Within too many tumor boards, patient cases are presented in a totally unstructured manner. This makes it very hard to adequately follow the cases and to come up with decisions that make sense because one cannot exclude the possibility that some information may be missing due to incorrect preparation and presentation of patient cases. This could lead to wrong or suboptimal treatment decisions.

The cancer care companion

The cancer care companion is a software solution that allows us to optimize some of the key features that are involved in the management of patients with malignant disorders. In the first place, we can use it in order to schedule the tumor boards and enter the individual patients in the tumor board schedule. We can then use it in order to actually manage the tumor boards, to validate tumor board decisions and to document the decisions in real-time. These decisions can then be transferred to a clinical cancer registry and later on to an epidemiological cancer registry. Consequently, the cancer care companion offers several advantages and represents an excellent tool for quality control in the care of cancer patients in our Center.

It provides on-site real-time documentation of a tumor board, and thereby it allows us to optimize tumor boards, as well as to standardize treatments and diagnostic approaches. The patients benefit from a system that that provides clinicians with quality control procedures, and structured information from other clinical or diagnostic departments.

Active patient pathways

Active patient pathways are a particularly useful tool offering great potential for the optimization of cancer care in our center. In the first place they provide evidence-based guidelines for patient care.

Secondly we can follow the individual patient within these guidelines, allowing us to use this tool as a quality control system.

Thirdly, we can use the active patient pathways as a training system for doctors who have limited experience in the care of cancer patients and tumor extension (e.g. in order to learn which diagnostic procedures should be performed and at which stage, when the patient should be introduced into a tumor board, what treatment options are available etc.).

In addition, the active patient pathways offer the possibility to increase patient numbers for recruitment into clinical trials, based on availability in our center. When used accordingly, it allows us to assess the efficacy of treatment and any associated side effects.

Using all of these features of active patient pathways will allow us  to provide patients with optimal diagnostics and treatment based on their individual scenarios.

All the clinics and institutes of the University Hospital involved in diagnosis, therapy and cancer research  have been combined in the ECCA with the aim of providing optimum care for cancer patients. The interdisciplinary cooperation of the various members of the ECCA is expected to generate patient benefit through the cooperation of all the experts with the highest degree of competence and experience. Research, teaching, diagnosis, therapy planning and aftercare are all coordinated within the ECCA.

Outreach

In addition, the aim of the ECCA is to optimize and encourage the support network in the Euroregion. The ECCA is the hub of the network and provides outreach for primary, secondary and care centers, as well as being the center of the region for quality assurance. It provides the various care centers with standard operating practices (SOPs) and quality management tools, either in the ECCA or in their own institutions. The aim is to provide a network of primary, secondary and tertiary care, including medical, psycho-oncological, psycho-social, spiritual and palliative care, hospices and home care.

Interdisciplinary task forces

The course of treatment in the ECCA is based on treatment pathways for different types of cancer, set up by interdisciplinary task forces. The task forces comprise experts from all disciplines concerned with cancer treatment who, together, set up appropriate courses of treatment on the basis of international guidelines and experience of the University Hospital. This ensures that patients always benefit from the latest developments in diagnosis, therapy and aftercare, supported by stringent quality control.

At the time of writing (January 2011) there are 14 of these task forces established:

- Task Force Bladder Tumors

- Task Force Bone and Soft Tissue Sarcomas

- Task Force Breast Cancer

- Task Force Colorectal Cancer

- Task Force Gastrointestinal Stromal Tumors (GIST)

- Task Force Head and Neck Tumors

- Task Force Hepatocellular Cancer

- Task Force Lung Cancer

- Task Force Malignant Melanoma

- Task Force Neuro-Oncology

- Task Force Ovarian Cancer

- Task Force Pancreas Cancer

- Task Force Prostate Cancer

- Task Force Renal Cell Cancer

In addition, a task force for tumor pain management has implemented a pathway, ensuring standardized pain management for cancer patients within the University Hospital Aachen.

The ECCA Tumor Bank

The ECCA Tumor Bank is a bank for storage of human biological materials (tissue, blood, serum, cells, DNA samples etc.) from cancer patients. Samples are collected and stored, together with documentation of relevant clinical (anonymized) patient and disease data. The ECCA Tumor Bank is part of the RWTH Aachen Biomaterial Bank, located in the Pathological Institute of the University Hospital Aachen.

Before every surgical procedure or biopsy patients are asked to give informed consent. The material stored in the Tumor Bank is “superfluous” material, which frequently occurs during biopsy procedures. Consequently, no additional material is taken for the Tumor Bank. The acquired samples are only used for research with the express permission of the patients. This permission can be withdrawn at any time without the need for an explanation.

Biobanks such as the Tumor Bank are an important resource for discovering the causes and mechanisms of many diseases. Tissue samples and documentation provide the basis for correct identification of benign and malignant samples. The samples can be used in new scientific investigations, providing the basis for clinical and translational research in oncology.

Modern oncology incorporates genetically based targeted treatment concepts, and many of the molecular mechanisms underlying the origin of tumors and progress of the disease have already been discovered. Identification of the genetic factors, and identification of predictive and/or diagnostic biomarkers with unique expression patterns, makes it possible to apply individualized cancer therapy. This knowledge has rapidly influenced the treatment options, so that cancer patients can already benefit from these new discoveries.

Epidemiological Cancer Register (Regional Register)

An epidemiological cancer register collects regional information on cancer patients, based on where the patients live, rather than the place where the diagnosis was made. In Germany, the epidemiological cancer register is governed by law. In the North-Rhine Westphalia Region a law was introduced on July 1^st, 2005, obliging every physician involved in the diagnosis and therapy of cancer patients to notify all cancer cases. Patient data from every clinic, medical practice and institution is passed on to the North-Rhine Westphalia Epidemiological Cancer Register in Münster, under strict data protection provisions.

The data from all German epidemiological cancer registers is collected within the 

central cancer register of the Robert-Koch-Institute in Berlin. However the data are incomplete, and data (which can be accessed on line) on new cases are only available for some of the regions. In cooperation with the Robert-Koch-Institute, the Society for the Cancer Register in Germany (Gesellschaft der epidemiologischen Krebsregister in Deutschland e.V) issues a publication on Cancer in Germany: Trends and Incidence.

Evaluation of the data in the epidemiological cancer register can lead to measures for prevention and early detection. It can show differences in the regional incidence of cancer and its development over time, making it possible to identify environmental and other risk factors. However, the epidemiological register does not give an indication of the quality of treatment. This requires a clinical cancer register, or cancer care register.

Clinical Cancer Register

The clinical cancer register is based on the data from individual institutions (clinics, cancer centers, specialized oncology practices, etc.).

The clinical cancer register is interdisciplinary and multi-professional, incorporating all levels of research, quality control, education and treatment. The treatment of each individual patient is recorded in detail, including diagnosis, therapy, side effects, progress of the disease and aftercare.

Adequately collected data enable a qualitative assessment, in other words, they provide a form of quality control in the care of cancer patients, and can be used for individual institutions’ benchmarking. For example, the development of cancer therapy can be followed and the quality of treatment between institutions can be compared. Additionally, a clinical cancer register can also be used to compare the quality of care within an institution if there are, for example, different departments treating patients with one disease (e.g. an oncology department and a gastroenterology department, both treating patients with GI-cancer). This gives patients the possibility to be informed of the expertise in specific diseases or the various types of treatment within an institution.

Clinical cancer registries are becoming increasingly important, as quality of cancer care is increasingly evaluated and certification issues become relevant for funding and health insurance agencies.

Thereby the quality of a clinical cancer registry itself has to be ensured. In this regard, important factors for this are completeness of data from all patients with a given disease seen within one institution, and the integrity of their clinical data.

Data for the clinical cancer registry within the ECCA are only collected after informed patient consent. As future patients will possibly benefit from these data,

the declared aim of the ECCA is to include all data from patients diagnosed and treated within the ECCA, once the ECCA registry, which is still under construction, enables optimal data and structured data collection.

Conclusion

The increasing incidence of cancer requires a comprehensive interdisciplinary care structure comprising diagnosis, therapy, preparatory and aftercare, as well as research into the various forms of cancer as a basis for new treatment approaches.

Interdisciplinary care requires a centralized unit that provides a single entry port for patients and allows the patients to be seen and taken care of by doctors from all of the individual specialties involved in the care of the patient.

Interdisciplinary tumor boards should be set up, including all specialties that are involved in the care of the patients, and that allow open discussion of the way in which diagnosis and treatment are going to be achieved and pursued in individual patient cases. Standardization of the information flow and working procedures of these tumor boards is very important in order to ensure that the cases are presented in a structured manner.

To ensure the quality of care, interdisciplinary patient treatment pathways have to be established based on guidelines that allow treatment decisions to be made within the pathway. In the context of an academic cancer center this also includes acquiring information for study and translation of research perspectives such as tissue banking.

References

[1] www.ECCAachen.de 

[2] www.nccn.org/professionals/physician_gls/f_guidelines.asp 

[3] www.krebsgesellschaft.de/wub_llevidenzbasiert,120884.html 

[4] http://www.dgho.de/informationen/leitlinien