Around 100,000 children in Germany live with a life-shortening illness.

For decades, there has been speculation about how many children, adolescents and young adults in Germany are living with a life-threatening or life-shortening illness. Reliable data has been lacking until now. Researchers at Witten/Herdecke University (UW/H) have now closed this gap. Under the leadership of Dr Larissa Kubek and Prof. Dr Boris Zernikow, they have developed the "Descriptive Framework for Assessing Epidemiologic Cross-National Transferability" - FACT for short. This method now makes it possible to obtain an overview of the number of children and adolescents affected.

In Norway, France and the UK, such data can be obtained from state health databases. In Germany, however, it is extremely difficult to analyse the data. There are several reasons for this: Children with palliative care needs often suffer from rare diseases. Many of these diseases can lead to early death, but have subtypes that are not life-shortening. For example, there are variants of the rare, blistering skin disease "epidermolysis bullosa" that hardly affect life at all - and others that are associated with a significantly shorter life expectancy. To calculate the prevalence, i.e. the total number of people affected, it is therefore not possible to count all patients with this rare disease, but only those with the severe forms. However, there are no databases or registers in Germany that allow such differentiation. Patients with this rare disease are not differentiated enough in the statistics to reliably identify the children with life-limiting conditions.

In addition, the available disease data is scattered across many institutions - from health insurance companies to hospitals and doctors' surgeries. They are mostly based on billing data, which is difficult to collate. However, a complete and valid analysis would require seamless consolidation. Until now, this has been an almost impossible endeavour.

New method brings clarity

The FACT project uses a predefined scheme to examine whether two countries are comparable in terms of their care structures and certain related and statistically reliable disease data. If this is the case, reliable prevalence data from country A, which is not available in a second country B, can be transferred from country A to country B - without the need for country B to collect its own prevalence data at great expense.

In cooperation with Prof Lorna Fraser from King's College London, the team from Witten/Herdecke University tested the FACT transfer method in practice for the first time. They first checked whether England (country A) and Germany (country B) could be considered similar on the basis of existing health data: they are. They then took the detailed prevalence data from England (country A) and transferred it to Germany (country B). The result: in 2022, 103,566 children, adolescents and young adults up to the age of 19 were living with a life-limiting illness in Germany - that corresponds to 65.30 people affected per 10,000. The English forecast was also applied to Germany for 2030. By then, between 107,934 and 138,817 cases are expected in Germany.

"Our FACT method saves resources and provides a solid basis for healthcare planning," says Kubek. Zernikow adds: "The new figures help us to close gaps in care in a targeted manner - for example in palliative care and hospice work around birth or in the transition to adult medicine."

For the researchers at UW/H, FACT is not just a tool for Germany, but a model with an international perspective. "Many countries face the same problems when it comes to recording life-threatening and life-shortening illnesses," says Kubek. "FACT shows that solid data can be generated even where registers and databases are lacking."

Further information:

The scientific paper has been published in the Journal of Palliative Medicine under the title “Introducing the Descriptive Framework for Assessing Epidemiologic Cross-National Transferability (FACT): Application to Extrapolating Pediatric Life-Limiting Condition Prevalence between two European Countries”: 
(https://www.liebertpub.com/doi/10.1177/10966218251376899).
The authors were Dr. Larissa Kubek, PD Dr. Julia Wager, Prof. Patrick Brzoska, Prof. Lorna Fraser, and Prof. Boris Zernikow.    

Cooperation partners are: PedScience, the German Children's Hospice Association (Marcel Globisch), the German Hospice and Palliative Care Association (DHPV) (Benno Bolze), the German Society for Palliative Medicine (Heiner Melching, Andreas Müller, Claudia Bausewein), the German Children's Palliative Care Foundation (Thomas Sitte), and the Federal Association of Children's Hospices (Franziska Kopitzsch).