title: [Patient guidelines in oncology: objectives, procedures and first experiences with this format].
abstract: 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.
authors.affiliation: Ärztliches Zentrum für Qualität in der Medizin, Berlin, Deutschland. Electronic address: schaefer@azq.de.
authors.forename: Corinna
authors.initials: C
authors.lastname: Schaefer
authors.affiliation: Hochschule Heilbronn, Medizinische Informatik, Heilbronn, Deutschland.
authors.forename: Richard
authors.initials: R
authors.lastname: Zowalla
authors.affiliation: Hochschule Heilbronn, Medizinische Informatik, Heilbronn, Deutschland.
authors.forename: Martin
authors.initials: M
authors.lastname: Wiesner
authors.affiliation: Ärztliches Zentrum für Qualität in der Medizin, Berlin, Deutschland.
authors.forename: Svenja
authors.initials: S
authors.lastname: Siegert
authors.affiliation: Ärztliches Zentrum für Qualität in der Medizin, Berlin, Deutschland.
authors.forename: Lydia
authors.initials: L
authors.lastname: Bothe
authors.affiliation: Deutsche Krebsgesellschaft, Berlin, Deutschland.
authors.forename: Markus
authors.initials: M
authors.lastname: Follmann
mesh_terms: D001943:Breast Neoplasms / Q000175:diagnosis / Q000473:pathology / Q000628:therapy; D032882:Comprehension; D005260:Female; D005858:Germany; D057220:Health Literacy; D006801:Humans; D008297:Male; D008495:Medical Oncology / Q000458:organization & administration*; D009313:National Health Programs / Q000458:organization & administration*; D009362:Neoplasm Metastasis; D009937:Organizational Objectives; D010174:Pamphlets; D010353:Patient Education as Topic / Q000458:organization & administration*; D017410:Practice Guidelines as Topic; D011471:Prostatic Neoplasms / Q000175:diagnosis / Q000473:pathology / Q000628:therapy; D011785:Quality Assurance, Health Care / Q000458:organization & administration; D011795:Surveys and Questionnaires
keywords: Oncology; Onkologie; Patienteninformation; Patientenleitlinie; Verständlichkeit; Zielgruppe; comprehensibility; patient information; patient versions of guidelines; target group