Paediatrician and epidemiologist Reinhard Holl does not like exaggeration. He knows the real statistics only too well and, at the same time, is well aware how different statistics relating to diabetes in children and adolescents are “sold” to the public. Holl is head of the Computer-based Quality Management in Medicine workgroup at the Institute of Epidemiology at the University of Ulm. He has been collecting data on diabetes since 1995 and has become an indispensable partner in all areas of diabetes research. Holl runs one of the largest diabetes registers in Germany.
It all started with a database Holl established as part of a German Federal Ministry of Health project on the improvement of chronic patient care. The register has grown over the years, paid for by funds from a broad range of sources, something that is quite usual in research. Holl's diabetes register has since expanded and now covers 92 percent of all potential diabetes patients including children, adolescents and adults. It stores information on about 180,000 patients and contains 1.2 million data, making it one of the largest databases on patient care in Germany. It integrates data provided by 305 treatment centres, hospitals, GPs practices, including institutions in Austria.
Since 2008 Holl has been coordinating the “Future Paediatric Diabetes” project that is part of the Diabetes mellitus network funded by the German Federal Research Ministry. He also coordinates a project in the adiposity network. Holl’s register will receive funding until 2020, and is therefore better off than ever with regard to funding, said Holl who heads up a team of ten. The Ulm researchers are part of a network of German research groups. Holl’s group collects the data, puts them through biometrical and epidemiological analyses and processes them for further use.
Cost is a major factor in the four projects that are part of the Diabetes competence network. One project is involved in looking for solutions for a central problem in paediatric diabetology: young diabetics who have reached puberty are often not seen by paediatricians as they are put into the adult category and are therefore seen by internal medicine specialists. A group of researchers from Düsseldorf has calculated the costs arising from the care of diabetic children. On the basis that the determination of the blood glucose level by the patients themselves is the most expensive of all diabetes-related costs, up to 27 percent of all paediatric diabetics use insulin pumps which are about three times more expensive than injection therapy. This finding surprised even the experts. Another project focuses on young patients in their social surroundings.
Well over 95% of all diabetics up to the age of 14 suffer from type 1 diabetes mellitus. There are about 25,000 type 1 diabetics and less than 1,000 type 2 diabetics in children and young adults. The experts are very concerned about the rising number of type 1 cases for which the causes are often unknown. It is true that more type 2 diabetes cases have been diagnosed from 2000 onwards, but it is difficult to clearly distinguish type 1 and type 2 diabetes from each other. Adiposity is no criterion either. In addition, there are about 1,500 to 2,000 rare forms of diabetes, which often take on a disproportionate importance in what is called “orchid research” publications.
More and more type 2 diabetes (age-related diabetes) in children and adolescents! Holl has seen all the headlines and calls for the public and press to calm down, pointing out that there are more articles and talks on type 2 diabetes than there are patients. There are around 1000 young diabetes type 2 children. He also says that it is wrong to talk about age-related diabetes in children. The majority of children affected – most of them girls - have a weight problem, often come from a migrant family and often have diabetic parents.These are facts that are not widely known because, as Holl has discovered, the public debate on diabetes does not touch on the associated social issues. According to Holl, type 2 diabetes is not primarily a medical problem, whilst its causes and effects are. Prevention must be a concern for society as a whole. The question needs to be asked – how will society deal with disadvantaged groups? It is necessary to find solutions somewhere between the two extremes of individualism and social welfare.
Holl does not like the sensationalism that the public debate on diabetes in children and young adults provokes. He does not see the dramatic development of diabetes suggested by the media, and he has access to reliable figures. At the same time, he is at pains to point out that he is not seeking to trivialise the situation. For him, the most important thing is to deal with the issue in a "calm, serious and targeted way at the same time as referring to reliable figures".
Reliable figures are available on adiposity (KIGGS) in children and young adults, but they are difficult to interpret because the German thresholds are lower than international thresholds, with the result that it appears that there are more adipose children and adolescents in Germany than in any other country except the USA.
The figures determined by the Robert Koch Institute in a Germany-wide survey (KIGGS) have shown that the disease has a clear social component - there are about three times as many sick children and adolescents in the lower social strata than in other social strata. According to the survey, 15 percent of children and young adolescents in Germany between the ages of three and seventeen are overweight and about 6% of the 15% are adipose. The greatest number of adipose children is found in the 14- to 17 year-old group (8.5 percent).
Holl finds it very disturbing that the problem of being overweight has been shifted from adults to children in the public debate. There is no information in the public domain that shows that the number of adipose children and adolescents is not actually growing in all the groups examined. Holl hints at the situation that adults are responsible for creating this misperception. The moral undertone seen in debates on overweight adolescents is misplaced. Holl regards the discussion as “unfair and wrong”.The epidemiologist is not convinced that prevention programmes carried out in high profile areas have any effect, because, as he says, they focus on the wrong target groups, namely middle-class kindergartens instead of immigrant homes. In addition, Holl believes that this prevention is not effective in families on unemployment benefit or Turkish girls that do not take part in sport classes.Some, although not all, German states have collected data on migrant groups, amongst which Holl also counts Russian Germans (“not taken into account at all”). The lack of relevant information is due to the fact that the public health service is moving away from the front line, and that, nowadays final school health examinations are rarely carried out.
Holl, like many of his colleagues, regrets that there is no joint programme in Germany, and that any measures undertaken are not standard practice and are only carried out in some areas. Holl is convinced that prevention is a job for educators, psychologists or behavioural experts rather than physicians and so he thinks it is wrong that medical associations deal with prevention.As a member of numerous diabetes organisations, Holl finds that the treatment of type 2 diabetes in young adolescents is particularly difficult. Such patients do not often stick to the treatment regime or one specific physician.