Information needs of patients with atopic eczema-aqualitative study

Abstract

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? The aim of the study was to analyze opinions and experiences of AE patients regarding their personal information needs. In all, 16semi-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). In all, 21persons participated in the 16interviews, including patients and relatives. Gender ratio was 2 : 1 (female/male); age varied between 19and 75years. The interviews revealed agap 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 amore 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. Patients perceived their doctor to be the most important contact person during the information seeking process. Within our study group, feeling alack of acaring contact person as well as alack of knowledge often led to not complying with astandardized, guideline-orientated therapy and of self-treatment. Filling this care gap seems to be an important approach to optimized patient care.