Project Description

Background

Treatment for tuberculosis is a long process and usually lasts at least six months. Side effects are not uncommon. While most patients are motivated to get well, external circumstances often make it difficult for them to take their medication regularly. In Germany, about three-quarters of people with tuberculosis were not born in Germany. Many of them face difficult life circumstances that create additional hurdles: uncertain residency status, a lack of financial stability, a lack of family or social support, and insufficient knowledge to navigate the German healthcare system.

State of Research

In Germany, the lengthy treatment for tuberculosis often cannot be completed in full. This increases the risk of relapse and the development of drug resistance. Everyone has a personal interest in getting well. Therefore, we assume that the reasons for treatment discontinuation are not due to a lack of willingness to cooperate. Rather, communication problems can contribute to a lack of understanding of the disease and a lack of knowledge about the illness and the healthcare system. Support services to help patients navigate the difficult treatment period are often lacking in the healthcare system. 

Project goals

So far, we know little about the causes of treatment discontinuation. The No1Lost project aims to change this by investigating the causes of treatment discontinuation. At the same time, this collaborative project is working on potential solutions and tools to help prevent treatment discontinuation. The project’s goal is to enable everyone in Germany to complete their tuberculosis treatment, thereby ensuring successful treatment. Over the course of its three-year duration, the project aims to establish a participatory network of expertise focused on treatment adherence. 

Areas of Work

The project was divided into various work areas, each of which is being addressed by the project partners. In a pilot project conducted in 2024, the work areas were selected based on preliminary scientific research. During an interdisciplinary workshop involving public health officials, social workers, physicians working in both clinical and private practice settings, and policymakers, needs and research gaps were identified and prioritized for the project.

‍Networking 

Preliminary work on the No1Lost project has shown that collaboration within networks is crucial for healthcare delivery, as it enables the sharing of knowledge and experience. ‍The No1Lost online platform is designed to showcase existing regional and supraregional networks in order to create opportunities for participation. A guide to network building is intended to support and promote the formation of new regional networks. Examples of best practices will demonstrate how effective networks can be established locally and contribute to improving healthcare provision.

Language and cultural mediation

Since linguistic and cultural mediation plays a key role in the success of therapy, we have devoted special attention to this topic in the form of a separate work package. Open, empathetic communication—ideally in the language in which the patient feels most comfortable—is the foundation for a trusting relationship with the healthcare providers. Information conveyed in this way can help alleviate fears and reduce prejudices both among those affected and within their social circles. In everyday medical practice, however, there is often not enough time for these in-depth conversations. Furthermore, existing regional or state-wide language mediation services are frequently unknown.

Financing of tuberculosis therapy

Depending on the residence status, different cost bearers are responsible for financing the therapy. It is often a complex and time-consuming task to clarify the correct responsibility in individual cases. To provide support in this process, we have compiled the experience of professionals from various treatment centers and prepared it in a practice-oriented decision aid. This is intended to facilitate the path toward reliable and secured financing of the treatment. 

Documents and Templates 

On the No1Lost online platform, we provide a library of frequently used documents and forms that can be utilized for social and medical support. These templates can be customized to meet individual needs. To ensure that the appropriate documents can be found quickly for various purposes and within regional legal frameworks, the documents are sorted by keywords and regions. 

MDR-TB cohort study

People with multidrug-resistant (MDR) and rifampicin-resistant (RR) tuberculosis (MDR/RR-TB) are particularly at risk of treatment discontinuation, as treatment is often more protracted and associated with more side effects. The No1Lost project is investigating the causes of treatment discontinuation in a prospective cohort study of MDR/RR-TB. To this end, the study examines not only clinical, microbiological, and radiological factors but also known sociomedical determinants of health as risk factors. 

Training and continuing education

To improve understanding of the social-medical challenges during tuberculosis treatment and to strengthen the role of social medicine, the No1Lost partners offer continuing education courses. An integral part of the social-medical curriculum is the use of a social-medical history to systematically assess individual support needs. The training sessions involve practical work on cases where treatment discontinuation appears likely. At the same time, participants receive guidance on conducting local case conferences with a social medicine focus.

Public relations

Many people are unaware of the importance of social medicine in the medical care of people with tuberculosis, as well as those with other illnesses. Through publications and workshops with journalists—who serve as multipliers—the No1Lost project raises awareness of the social-medical dimension of tuberculosis treatment among the general public and policymakers. By providing factual and accessible information, the project aims to break down prejudices and counteract the stigmatization of people with tuberculosis. 

‍