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Pilotstudie zur medizinischen Versorgungslage chronisch kranker Patienten mit MCS (Multiple Chemical Sensitivity)

Das Projekt "Pilotstudie zur medizinischen Versorgungslage chronisch kranker Patienten mit MCS (Multiple Chemical Sensitivity)" wird vom Umweltbundesamt gefördert und von Fachkliniken Nordfriesland gGmbH durchgeführt. Access to health care in persons with multiple chemical sensitivity (MCS): A pilot study. Background: The aim of this pilot study was to investigate the access to health care in persons with multiple chemical sensitivity (MCS) and to examine the feasibility of an online-questionnaire based study including members of self-help groups. Methods: The study design is that of a case series for a pilot study. A questionnaire containing questions with respect to access to health care services and satisfaction or problems with them, was send per email to the chairmen/ chairwomen of three self-help groups (SHG) in northern, western and southern Germany with the request to forward the questionnaire online to all members with email. Results are descriptive and given as means (diameter) and frequencies (percent). Results: Response rates were only sufficient for evaluation in the northern SHG (48 percent), where n=25 questionnaires were included into analysis. Of all members of the northern SHG only 24 percent were accessible per email. Time between onset of symptoms and first diagnosis of MCS were 12.8 years. The mean age at onset of symptoms was 34.2 years. Before first diagnosis of MCS the participants had had diameter=74.8 visits at doctors and diameter=2.2 inpatient stays at clinics to find a cause for their symptoms. At the time of the inquiry only 40percentof the participants were in the care of practitioners with a specialization in environmental medicine. The waiting periods for an appointment with a specialist for environmental medicine were long (diameter=7 weeks) and the distances far (diameter=333 km). The understanding of health care personnel in other than environmental medicine care units for intolerance reactions as regards fragrances, pharmaceuticals and foods, respectively, seems poor. The satisfaction of the participants with their access to health care on a scale of 0-10 was diameter=2.6. Of the participants 60 percent had low grade satisfaction (0-3), 24 percent had medium grade satisfaction (4-6) and 8percent had high grade satisfaction with their access to health care. Conclusion: The access to health care in members of a SHG with MCS is characterized by severe undertreatment due to long periods of time between onset of symptoms and diagnosis, poor understanding of intolerance reactions in health care personnel and restricted availability of environmental medicine care units. The satisfaction of participants with their medicinal treatment is understandably low. In respect to the feasibility of a large online study to investigate the access to health care with members of self-help groups we conclude that this is not possible, because of low percentage of members accessible per email in addition to low response rates.

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