[The Well-informed Patient: a Survey on Patients’ Initiative in Seeking Disease-related Information]


Internet and print media are frequently used by laypersons to learn about health issues. The objective of this study was to find out whether people with mental disorders showed a special pattern of usage. Where and why do they seek for information about their disorder? How do they experience their search? In semi-standardized interviews, we surveyed 200 psychiatric inpatients. Only patients of the following diagnostic groups were included: 1. Schizophrenia, schizotypal and delusional disorders (F20-F29), 2. Affective disorders (F30-F39) and 3. Disorders of adult personality and behavior (F60-F69). We focused on the sources the patients had used and the experiences they had in the course of their internet search. The vast majority had already searched for information about psychiatry, psychology or medication via internet or in print media. Most participants described positive emotions while reading. More than two-thirds rated the information as useful. Only 10 participants discontinued or rejected therapeutic measures due to information they had gained. Patients with personality disorders were significantly more likely than other patients to attribute their symptoms to a wrong diagnosis after seeking for information. Overall, psychiatric patients mostly experience helpful effects of reading medical information. In rare cases there are negative effects, e. g. negative emotions, discontinuation of therapy or an incorrect assessment of one’s own illness. Further research is required in order to find out how the use of internet by people with mental disorders, which is already successful in many cases, can be improved even further.

Further information can be found here:

Telger, A., Lencer, R., Arolt, V., & Notzon, S. (2022). Der gut informierte Patient: Wie stationär behandelte psychiatrische Patienten die Suche nach Informationen über ihre Erkrankung erleben [The Well-informed Patient: a Survey on Patients’ Initiative in Seeking Disease-related Information]. Fortschritte der Neurologie-Psychiatrie, 10.1055/a-1946-5357. Advance online publication. https://doi.org/10.1055/a-1946-5357

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