From symptom to diagnosis: How long is the leadtime for multiple sclerosis patients in germany ?
MS is a disease where patches of inflammation occur in parts of the brain and/or spinal cord. This can cause damage and lead to various symptoms. Almost all the symptoms that can occur with MS can also occur with other diseases. It is often difficult to be sure if a first episode of symptoms (a first relapse) is due to MS. If you are diagnosed with MS or a first-time MS event, it is recommened by medical guidelines to start treatment as soon as possible. There is strong evidence that MS often causes more damage in the first year than in later years.
In this study, we focused on the leadtime between first symptoms and diagnosis of multiple sclerosis in Germany.
A standardised, anonymous questionnaire was sent to members of the German Multiple Sclerosis Association including four states of Germany: 7050 patients in Northrhine-Westfalia, 1985 patients in Berlin, 770 patients in Saxony-Anhalt and 1342 in Saxony. Response rates were between 44.8 to 61.0 %. Patients were questioned with regards to sociodemographic data, MS-related topics, therapy, adverse effects and compliance. Leadtime was calculated from patients specifications on the onset of first symptoms and medical diagnosis.
Analysis showed that average leadtimes were 5.1 y in Northrhine-Westfalia, 5.3 y in Berlin, 6.5 y in Saxony-Anhalt and 6.0 y in Saxony. The corresponding medians ranged from 3.0 to 4.0 years. Patients who were diagnosed after the year 2000 indicated leadtimes from 5.4 y in Berlin and 6.9 y in Saxony. Trend analysis revealed no significant change. However, there were significant gender differences in leadtime: male patients reported lower leadtime than females (0.31 y)
While medical guidelines recommend early onset of MS-therapy, patients reported long leadtimes from first symptom to diagnosis. Even patients diagnosed after the year 2000 indicated similar leadtimes. Data from the Multiple Sclerosis Registry in Germany including 5445 patients from 57 leading multiple sclerosis center showed an average leadtime of 3.4 y. This indicates that even in optimized medical care settings, an early onset of MS-therapy is not reached. Moreover, it seems that diagnosis is biased by a ‚Yentl-effect‘ resulting in shorter leadtime for male than for female patients. Health care system is challenged to reduce leadtime in MS-patients to enhance therapeutic chances.
Learning Areas:Chronic disease management and prevention
Other professions or practice related to public health
Define leadtime in clinical epidemiology. Identify the problem for reducing the leadtime in multiple sclerosis patients Analyse factors associated with long leadtime
Keyword(s): Epidemiology, Chronic Disease Management and Care
Qualified on the content I am responsible for because: I have been the principal of multiple fundes grants by statutory health insurers docusing on the quality of medical care. I have published more than 200 papers on various aspects of chronic disease, esp. multiple sclerosis. As a professor for public health at the TU Dresden, I encourage Ph.D students to do research in this field.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.