[Information needs of patients with atopic eczema-a qualitative study]. / Informationsbedürfnis von Patienten mit atopischem Ekzem ­ eine qualitative Studie.

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.

Evaluating Written Patient Information for Eczema in German: Comparing the Reliability of Two Instruments, DISCERN and EQIP.

Patients actively seek information about how to cope with their health problems, but the quality of the information available varies. A number of instruments have been developed to assess the quality of patient information, primarily though in English. Little is known about the reliability of these instruments when applied to patient information in German. The objective of our study was to investigate and compare the reliability of two validated instruments, DISCERN and EQIP, in order to determine which of these instruments is better suited for a further study pertaining to the quality of information available to German patients with eczema. Two independent raters evaluated a random sample of 20 informational brochures in German. All the brochures addressed eczema as a disorder and/or therapy options and care. Intra-rater and inter-rater reliability were assessed by calculating intra-class correlation coefficients, agreement was tested with weighted kappas, and the correlation of the raters' scores for each instrument was measured with Pearson's correlation coefficient. DISCERN demonstrated substantial intra- and inter-rater reliability. It also showed slightly better agreement than EQIP. There was a strong correlation of the raters' scores for both instruments. The findings of this study support the reliability of both DISCERN and EQIP. However, based on the results of the inter-rater reliability, agreement and correlation analyses, we consider DISCERN to be the more precise tool for our project on patient information concerning the treatment and care of eczema.