Information needs of patients with atopic eczema-a qualitative study

Introduction: Often patient information in atopic eczema (AE) does not meet the criteria of evidence-based patient information. What are the information needs of affected patients? Objective: The aim of the study was to analyze opinions and experiences of AE patients regarding their personal information needs. Methods: In all, 16 semi-structured interviews were conducted with patients with AE based on an interview guide. Subsequently the audio-taped interviews were transcribed and analyzed using deductive-inductive methods. Standards of qualitative research were ensured using the consolidated criteria for reporting qualitative research (COREQ). Results: In all, 21 persons participated in the 16 interviews, including patients and relatives. Gender ratio was 2 : 1 (female/male); age varied between 19 and 75 years. The interviews revealed a gap in care for patient information about AE. Especially the lack of time in the physician-patients encounter was criticized. Many of the affected felt left alone and forced to take a more active role in the search for information and therapy itself. Depending on stage and duration of the disease, some persons had the impression that their search for information was too time-consuming in relation to the possible benefits. Conclusion: Patients perceived their doctor to be the most important contact person during the information seeking process. Within our study group, feeling a lack of a caring contact person as well as a lack of knowledge often led to not complying with a standardized, guideline-orientated therapy and of self-treatment. Filling this care gap seems to be an important approach to optimized patient care.