For some serious illnesses such as obesity, prostate cancer and chronic kidney failure several treatment methods exists. Each of these methods will have unlike impacts on a person’s live. Sometimes it is unclear which treatment will give the best results, due to uncertainties how the disease will develop and how the patient will react to the treatment, in other cases comparable medical outcomes might be expected. In such cases it is valuable to take the patient’s lifestyle, values and beliefs into account when making a choice for one of the treatments. This process is called Shared Decision Making (SDM).
It is not only for ethical reasons that SDM is interesting. As people live longer and more people suffer from a lifestyle related diseases, there are more patients that need care for a longer period of their life. The healthcare systems of today need to change to be sustainable in the future. Studies have shown that better informed and empowered patients more often choose for a form of home care. Home care often leads to a better quality of life for the patient, is in many cases a cheaper option than treatment in hospital, and leaves more hospital beds available to people in need of specialist care.
Before patients can discuss preferences with their doctor and collaboratively decide which treatment option fits best with their personal situation, they first need to be informed about the different treatment methods that exist. Second, they need to be supported in evaluating the different treatment options to get an idea of what fits best with their live, values and beliefs. Tools facilitate these evaluations are called patient decision aids.
In this project, chronic kidney failure is taken as an example case. It is a condition in which the function of the kidneys eventually becomes so strongly reduced that people will need treatment to survive. People with this condition have a choice between four main types of treatment, but within these four main types different options for treatment schedules exist, such as treatment at home, or in the hospital, during the day or during the night, being cared for by a nurse or performing the treatment independently (image 1). The objective of my PhD project is to uncover what support patients need to be able to take part in the SDM process and to design a patient decision aid that provides this support.
Image 1 – The four main treatment types for chronic kidney failure
To achieve this I am investigating which methods for information mediation and patient decision aids currently are being used and how patients experience this. I do this via three case studies for which I interview medical experts, do observations and interview patients. The next step is the design and evaluation of a new patient decision aid. So far we have developed a concept of a board game, which is called Kidney’s Journey (image 2).
Image 2 – First idea for a board game
During the game situations that resemble consequences of the different treatment options are presented to the players. The idea is that this helps the players reflect on which consequences they find acceptable and which consequences they would like to avoid. Before the game is evaluated with patients, caregivers and medical professionals, it will be evaluated by students and game professionals and updated in accordance.