gms | German Medical Science

Background: National Disease Management Guidelines (NDMG) provide evidence-based recommendations for the assessment and treatment of chronic widespread diseases for physicians. On the basis of NDMG we develop patient information material (PIM).

Context: The NDMG 'low back pain' (LBP) advises a paradigm shift as active therapeutic methods requiring patients' commitment and motivation are favoured. Using this topic as an example, we provide an overview of our methodology and address critical issues in the development process of PIM.

Description of Best Practice: In cooperation with five patient representatives we developed a lay version of the NDMG LBP following our standard procedure. This first draft was reviewed by selected clinical experts of the NDMG. Subsequently, experts and the lay public were invited to comment on the provisional patient guideline (PG) during a one-month consultation period. Comments revealed different views between physicians' and patients' preferences. This PG particularly addresses 'expert patients' because of its high volume (>100 pages). To reach more patients we developed two short patient information leaflets (SPILs) from the PG. These two-sided leaflets, one on acute and one on chronic LBP, were written in plain every-day-language. Both SPILs were reviewed by clinical experts and patient representatives. Most comments which led to changes were submitted by patients. We attached special importance to a clear design and self-management strategies.

Lessons: PIM accompanying clinical guidelines may serve as a patient-to-doctor communication tool and a decision-making instrument for patients. Patient involvement is essential for developing PIM targeting specific groups.