Patients assigned to the Center for Rare Diseases often already have experienced an extensive diagnostic phase with many visits to the doctor. A particular source of distress lies in the long period of uncertainty about the cause of their symptoms. This is often accompanied by decreasing quality of life as well as a loss of performance at work and social participation.
The evaluation of patient cases at the A-Center for Rare Diseases in Würzburg in 2015 showed that more than 90% of the patients examined in the Outpatient Clinic for Rare Diseases had a secondary mental illness in addition to their somatic illness, or even primary mental illness.
In cooperation with the health insurance companies, a dual pilot/guide structure is being introduced at 11 centers for rare diseases in Germany. More than 1300 patients who contact a ZSE for diagnosis will be invited to participate. From 10/2018 to 09/2019, the study participants will be cared for by a specialist, such as a paediatrician, internist or neurologist in a consultation hour for unclear diagnoses within the framework of the current standards of care (control group). From 10/2019 to 09/2020, in accordance with the new form of care, an examination will be carried out both by a somatic specialist and by a specialist in psychosomatic medicine or psychiatry (intervention group). Both doctors coordinate interdisciplinary, regional and national case conferences with experts from all disciplines. Patient and referring physician receive a comprehensive report based on a joint doctor's letter and, if necessary, further care via telemedicine.
The patients of both study arms will be subject to a follow-up 12 months after inclusion.
Consortium partners of the project are the (university) clinics with their centers for rare diseases in Aachen, Bochum, Frankfurt, Hanover, Magdeburg/Halle, Mainz, Münster, Regensburg, Tübingen, Ulm, and Würzburg, ACHSE e.V., the Techniker Krankenkasse and the IKK gesund plus. The AOK Hessen supports the project as cooperation partner.
Further information can be found on the website of the Center for Rare Diseases (in German).