Background: To make informed decisions, patients need reliable information on their disease. In Germany, some evidence-based clinical practice guidelines, for example on haematological malignancies, are being prepared in cooperation with the German Guideline Program in Oncology (GGPO), funded by the German Cancer Aid. However, these guidelines are not always accessible and understandable for laypersons, as they are aimed at professionals treating the patients. To make health information available to the affected group and provide patients with the best possible information about their disease, patient guidelines are created.
Objectives: To create evidence-based and accessible patient information in the form of patient guidelines by translating the complex content of clinical practice guidelines into lay language.
Methods: First, evidence-based clinical practice guidelines are developed in collaboration with patients and patient representatives. After completion of such a guideline, the patients and patient representatives involved in the development process are invited to review and prioritise the topics and recommendations based on their relevance for patients. The patient guideline is created using a strict methodology and template provided by the GGPO. Recommendations and information are translated into lay language; technical terms are avoided. Several feedback rounds with clinicians and the patient representatives are initiated and, following a public consultation stage, the patient guideline is published online and freely available as a printed version.
Results: Recommendations for the clinical practice guidelines were based on systematically researched pre-defined questions and outcomes prioritised on patients’ needs. Patient guidelines for multiple myeloma and Hodgkin lymphoma were successfully published. A patient guideline for diffuse large B-cell lymphoma is currently being prepared; the topics of the clinical practice guideline were evaluated according to their relevance. Topics like general therapy options, treatment of relapses, and post-treatment care were rated as particularly important. Specific details, such as irradiation position in radiotherapy, were considered less relevant for patients. The process of translating the guideline into lay language is ongoing, a first draft is planned for summer 2023. Conclusion: Collaborating with patient representatives allows the creation of accessible, understandable, and evidence-based information for patients in form of patient guidelines providing patients with the best possible guidance.