In Germany children with cancer have a high probability of survival

Internationally viewed, medical care in Germany for children with cancer is very good as far as survival is concerned. However, other aspects, such as quality of life, pain, and long-term consequences of the disease are still insufficiently investigated in studies. This is the conclusion of the Institute for Quality and Efficiency in Health Care (IQWiG) in its final report published on 16 October 2009.

Establish mandatory quality standards

Every year in Germany approximately 1800 children under 15 years of age are diagnosed with cancer. In order to provide them with the best possible care, the Federal Joint Committee (G-BA) drew up a quality assurance agreement in 2007 (Quality Assurance Agreement on Paediatric Oncology, German Version). Its aim is to ensure that hospitals in Germany follow mandatory standards in providing care to children and adolescents with cancer.

In order to ensure quality of care in the long term, the G-BA also commissioned IQWiG to present a scientific evaluation of both the current status of the existing infrastructure und the quality of care prior to the agreement. The Committee wishes to establish whether and how the already existing quality requirements need to be adapted.

Analysis of medical care difficult

The aim of the medical care analysis commissioned by the G-BA is not only to describe the current status of quality of care, but also to undertake an international comparison and identify any potential areas for improvement. As medical care in the field of oncology is very complex, CPGs, narrative overviews, and official statistics were also included alongside a total of 106 therapy-optimizing, cohort and cross-sectional studies. This distinguishes this analysis from the Institute's benefit assessments of medical procedures.

From the very beginning of the investigation it was clear that reliable quality indicators for procedures and infrastructure are lacking in paediatric oncology in Germany. Cross-sectional studies were therefore identified that described at least some features of infrastructure. This includes, for example, facilities in the largest hospitals, palliative care, and the situation regarding psychosocial services. However, there was no information on smaller hospitals and their infrastructure.

80% of children survive at least 5 years

IQWiG restricted the investigation to the most common oncological diseases. Children and adolescents who had acute lymphoblast leukaemia (ALL) or acute myeloid leukaemia (AML), non-Hodgkin lymphomas (NHL), Hodgkin's disease or tumours in the central nervous system (CNS) were included.

IQWiG came to the conclusion that overall more than 80% of children with cancer in Germany between 2000 and 2004 survived at least 5 years. 90% of children with cancer received treatment here in Germany in therapy-optimizing studies, which is also an indicator of a high standard of care. When survival probability is compared internationally, medical care in paediatric oncology is very good in Germany. Over the last 20 to 30 years it has improved markedly.

During the "submission of comments" procedure, references to additional publications were given by the professional association, which could then be incorporated into the final report. Thus, IQWiG was able to additionally assess the "event-free survival" outcome of children diagnosed with high-grade brain tumours.

Lack of studies on important outcomes

However, on other important patient-relevant outcomes, such as "health-related quality of life" and "pain", there was a paucity of studies. For the "deaths due to therapy" outcome, studies on AML and ALL as well as NHL could be located, but there are no clinical comparisons for Hodgkin's disease and CNS tumours.

There is also a lack of studies that systematically investigate "long-term consequences" of disease and therapy, although this does not apply to second tumours. The German Childhood Cancer Registry records not only all primary tumours but second tumours as well. Children and adolescents who have survived cancer are 10 to 20 times more likely to develop a tumour again than the general population. A similarly high risk is also reported in international studies.

Infrastructure: lack of quality indicators

Part of IQWiG's commission was also concerned with examining the existing quality of procedures and infrastructure. Up till now, however, there have been no defined quality indicators in paediatrics or paediatric haemato-oncology in Germany.

IQWiG did find indications of some aspects of infrastructure, such as a parent staying with their child in hospital or the value of music therapy in the management of the disease (often based on narrative overviews). However, the Institute cannot draw a general conclusion concerning specific aspects of infrastructure, as there are only a few studies. The results often refer exclusively to the large centres or are partially out of date.

More studies are necessary as well as a discussion on quality

Further studies are urgently needed. This particularly refers to the following patient-relevant outcomes that up till now have been neglected in studies: "quality of life", "pain", and "long-term consequences". Only then can it be determined whether the evidence gaps are actually concealing deficits in care.

It is also vital to continue the discussion on indicators that can measure quality of infrastructure and procedures. Uniform indicators must be applied across Germany if the success of quality assurance measures used to date are to be evaluated.

Report preparation procedure

IQWiG published the preliminary results in the form of the preliminary report in March 2009 and interested parties were invited to submit comments. When the comments stage ended, the preliminary report was revised and sent as a final report to the contracting agency, the Federal Joint Committee, in August 2009. Documentation of the written comments and minutes of the oral debate are published in a separate document simultaneously with the final report.

An overview of the background, methods and further results of the final report is provided in the following Executive summary.

Contact: Tel. 0221 35685-0, info@iqwig.de