Patientenleitlinien in der Onkologie: Zielsetzung, Vorgehen und erste Erfahrungen mit dem Format

For several years patient versions of guidelines have become mandatory in the German Guidelines Program in Oncology (GGPO). Based on the methodology that has been developed for the German National Disease Management Guidelines Program, patient versions of guidelines translate the recommendations of clinical practice guideline into plain language and provide information about the harms and benefits of the interventions being addressed in the guideline. They are developed by a group of guideline authors (experts as well as patients), they are consensus-based and aim to create transparency in recommendations for physicians and their rationales. An automated analysis of readability shows that patient versions of guidelines are specific to the target group of educated lay people. Moreover, the responses to a reader feedback questionnaire indicate that comprehensibility, level of detail and depth of information are considered highly relevant and positive by users. Thus, patient versions of guidelines meet the needs of a specific target group. Nevertheless, the development of other formats for readers with low levels of health literacy or cognitive competencies is desirable. Currently it remains unclear if these simplified formats are able to reflect the complexity of high quality clinical practice guidelines.