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The role of the EBMT activity survey
At the time of its introduction in 1990, the EBMT activity survey was planned as a novel instrument to capture comprehensive data on the current status of haematopoietic stem cell transplantation (HSCT) and to distribute this information rapidly. Development of electronic data capture systems such as ProMISe was still in its very early stages and outcome data were mainly collected by paper. The time from transplant to outcome analysis was often many years after transplant. Transplant teams were interested in knowing what the others did as quickly as possible. With its simple one page design, it became possible to collect the information on the number of patients transplanted in the preceding year quickly and efficiently. Information was restricted to indication, stage of the disease, donor type and stem cell source. By the time of the annual meeting in March, data from the previous year were ready to be presented. Thanks to its efficiency, the survey quickly became very popular and a highlight of the annual meeting. It was soon adopted by the general assembly as a useful tool and was integrated into the mandatory quality control system. In 1990, 143 teams from 20 countries participated and reported a total of 4234 HSCTs. For the 2007 survey, the forms were sent to 650 teams in 45 countries and based on the 2006 survey; numbers are likely to exceed a total of 26000 patients with a first transplant in 2007. The data will be presented at the EBMT annual meeting in Florence and will be published as soon as the survey is completed later in the year.
One of the secrets of its success was the rapidity of the publications stemming from the data, always within one year from data collection. Participating teams were kept informed, even about the preliminary data and integrated into the process. These data in return were always beneficial for the transplant teams in their discussions with local authorities or health care agencies. With time the activity survey evolved to more than just a collection of data. They documented quickly the widespread use and the increase of HSCT in general. HSCT is a rapidly expanding field with many changes in its use and the technology practised. As such the survey captured the change in stem cell source from bone marrow to peripheral blood and the rise and fall of HSCT in breast cancer and chronic myeloid leukaemia. In addition the rapid adoption of reduced intensity conditioning transplants or cord blood as stem cell source was quickly apparent.
Evolution of transplant rates for allogeneic HSCT from 1990 to 2006 in high, middle or low income countries by World Bank category. The slide shows the near linear increase year by year over the whole observation time.
Permission obtained from Haematologica/the Hematology Journal website http://www.haematologica.org; Predictability of Haematological stem cell transplantation rates, Gratwohl et al. Haematologica, 2007; 92:1679
The survey can describe the general evolution of HSCT in Europe. At the same time, it revealed discrepancies between participating European countries. Some differences were obvious; there were fewer transplants in Eastern European countries. Due to its near complete coverage of transplants in Europe, it became possible to get an insight into macro- and microeconomic aspects of HSCT. Transplant rates, e.g. the number of transplants per 10 million inhabitants, team density and team distribution, e.g. the number of teams per 10 million inhabitants or the number of teams per 10000 km2 have become established criteria and are widely used today in the description of the status quo and as assessment criteria for infrastructure requirements within countries. The correlation between transplant rates and gross national income per capita (GNI/capita) was recognised and revealed clear novel findings. Normally, more transplants were performed in countries with higher GNI/capita, less in countries with lower GNI/capita. For some indications, e.g. chronic myeloid leukaemia or Hodgkin’s lymphoma, this is no longer the case. In view of the increasing costs for some modern drug therapies, HSCT has become a cost efficient therapy in countries with lower GNI/capita. Finally, following the survey over the entire time span showed a near linear evolution in activity over time; HSCT rates follow standard economic rules and have become highly predictable, as illustrated in a recent publication (Figure 1).
The EBMT activity survey will now be extended within the newly established World Wide Network for Blood and Marrow Transplantation WBMT (www.wbmt.org) to a global survey. It will be interesting to compare the European data with those on a global level or overseas. The survey is not only open to all members of EBMT and its contributors but also to any transplanting team within Europe. Suggestions, criticisms or concepts for publications are always welcome. The members of the EBMT Activity Survey Office take use of this opportunity to thank all participating teams for their contributions and assistance.
A. Gratwohl
H. Baldomero
EBMT activity survey office
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