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No1Lost - Competence network for therapy adherence

No1Lost is a project of the DZK, the Justus Liebig University Giessen and the CAPNETZ STIFTUNG.

Term: 01.07.2024 to 31.12.2027

Background

Despite modern diagnosis and treatment options, tuberculosis remains one of the most common infectious diseases worldwide. There are few cases of TB in Germany, but they are increasingly occurring in vulnerable risk groups and require good interdisciplinary care. Despite good treatment options, treatment is often discontinued, particularly in the case of drug-resistant forms of tuberculosis. The aim of the No1Lost project is to research the care structures for tuberculosis in Germany in order to find the causes of treatment discontinuation. The project aims to improve interdisciplinary care and contribute to making it easier for people with tuberculosis to adhere to treatment by providing socio-medical support.

A preparatory study showed that care is currently heavily dependent on the individual commitment of the professionals involved and that the necessary socio-medical support is often not sufficiently funded. The establishment of strong networks consisting of medical and socio-medical specialists was seen by the participants as a result of the study and as an important basis for the long-term promotion of treatment adherence. The need for improvements in communication options with TB patients was also recognized.

Overview of some of the central contents of the No1Lost project

  1. Establishment of a nationwide competence network for therapy adherence:
    • Establishment of an accessible, interactive Internet platform
    • Development of a digital map showing regional networks and support options
    • Advisory services for people involved in care provided by an interdisciplinary network of experts
    • Guidance on regional networking
  2. Research into risk factors:
    • Conducting a prospective cohort study to record clinical and socio-medical risk factors in patients with multidrug-resistant tuberculosis (MDR-TB) who are particularly at risk of treatment discontinuation
    • Analysis of the care structures for tuberculosis in Germany and the existing barriers and enhancers for treatment adherence through qualitative and quantitative research in the Competence Network for Treatment Adherence
  3. Support for medical care:
    • Provision of practical tools and best practice examples for socio-medical support
    • Organization of interdisciplinary case conferences as required to discuss complex socio-medical issues
  4. Overcoming language and cultural barriers:
    • Improving understanding between patients and practitioners through language and cultural mediation to promote communication and trust
  5. Offer of further training:
    • Development and implementation of further training for people-centered, socio-medical support for and communication with tuberculosis patients

An interactive network map was developed by the DZK as part of the No1Lost project to facilitate the search for specialized care providers for drug-resistant tuberculosis in Germany and to provide an overview of local contact points. It shows the German MDR-TB network, which now includes 60 clinics. Outpatient specialist care (ASV) for tuberculosis was also integrated based on data from the ASV service center.

By publishing the current status, we would like to motivate people to join the network. Of course, the networks shown on the map cannot fully represent the healthcare landscape in Germany. If a care facility is missing, please send feedback to the DZKinfo@dzk-tuberkulose.de

Cooperations