The Kidney Guide is an unique decision aid for kidney patients who have to choose between different treatment modalities. The uniqueness is in the patient experience and values base of it; in showing all 9 different treatment modalities; using 19 different subjects to reflect on; is easy accessible and also open for persons with low health literacy. Although developed by the patients organization, this development has been done in full cooperation with the different medical professionals; is part of the medical guideline ‘Renal Replacement Therapy, yes or no’ and is part of a large study to improve clinical outcomes (DOMESTICO). This instrument is well known by care professionals and also most used of all instruments on shared decision making (SDM) in the process of choosing a RRT or not.
The uniqueness lies also in the fact that our contribution to SDM is two sided: we train patients and medical professionals in what SDM in practice means and what and how tools can be used. This process with all the instruments is shown in the figure.
The implementation of SDM is only in a starting phase although a lot of care professionals think they are already using SDM. From patient perspective this is different. To a lot of patients not all the treatment modalities are mentioned in the consult room in preparation for RRT. And also only 30% of the patients in a NVN online panel questionnaire had the option grid/consult card handed over during the process of informing the patient about RRT. In the Kidney Guide all options are mentioned, all instruments are included and the medical and patient perspective is integrated in one instrument. The traditional cycle of care from illness to healthy again does not apply in the case of chronic kidney disease. Once a kidney patient, always a kidney patient. Your life can improve a lot with transplantation but the side effects of immunosuppressive drugs are quite drastic. So both sides (medical and patient perspective) are of importance.
Use of this instrument doesn’t cost anything for the hospital or the medical professionals. Not even time. For the patient it will bring a better understanding of what every treatment modality can mean to them. They can have a more in-depth dialogue with the doctor/nurse about the best possible treatment in their situation. They are more aware of side effects, possible complications, the meaning of lifestyle, adherence, and how the treatment can fit in their everyday life (vacation, sports, family planning etc). So, a choice that suits a patient better and as a result more quality of care without more expenses.