De kwaliteit van patiëntenfolders kan beter: een beschouwing aan de hand van radium-223-therapie

Patients and their peers need to be adequately informed to ensure proper treatment selection, and to facilitate optimal realisation and outcome of treatment. Written patient information can contribute, but only when brochures are of sufficient quality. An evaluation of patient brochures for radium-223 therapy in the Netherlands revealed significant differences in the information provided, as well as discrepancies between the brochures and national guidelines and product documentation. This potentially leads to confusion, false expectations, wrong treatment decisions, suboptimal realisation and outcome of treatment, and unnecessary toxicity and in radiation hygiene risks. Here we discuss the option of national patient information brochures that can be used by all centres in order to circumvent such issues. This would require collaboration between all medical professions, patient organisations and other groups involved, and responsibilities for medical information, distribution and updates must be properly defined. A national patient information brochure of this kind is currently under development for radium-223 therapy.