Shared Decision Making; Designing for Cancer Care

Abstract

What role patients should assume in medical decision making is an issue that has stimulated much debate. A wide variety of opinions exist, ranging from the view that patients should assume at least some responsibility for their own treatment, to the position that it is unwise to encourage such participation because patients do not have the specialised knowledge required to make treatment decisions (Degner, Sloan, 1992). The difficult process of shared decision making (SDM), is a process in which the physician shares with the patient all relevant risk and benefit information on all treatment alternatives and the patient shares with the physician all relevant personal information that might make one treatment or side effect more or less tolerable than others (King, Eckman, & Moulton, 2011). SDM is currently being advocated by both healthcare professionals and patients as the ideal for decision making (Stiggelbout, Pieterse, & De Haes, 2015). The process of SDM is difficult to implement, for example because it has proven difficult to create access to balanced and easy to understand information for patients.

The difficulty of implementing SDM also applies to adjuvant chemotherapy treatment decisions regarding patients with colon cancer. This decision-making moment occurs after surgery when the pTNM-classification (UICC, 2010) shows a certain value which suggests if adjuvant chemotherapy is applicable. During the multidisciplinary consultation (IKNL, n.d.) the best treatment option is discussed in the eyes of the physicians. This is then shared with the patient during the consultation with the oncological surgeon. During the next consultation with the oncologist, it is expected of the patient to make a final treatment decision.

Different research methodologies like literature research, semi-structured interviews and observations were performed to obtain the understanding of the current decision-making procedure concerning adjuvant chemotherapy for colon cancer patients. The insights obtained from the observations and semi-structured interviews, were used to create the patient physician experience journey. Combining this with the theoretical framework, the design goal for this project emerged.

 
The aim of the design process was to Create a User Interface for a web application that ensures that both patient and physician are aware of the different possible treatment options, understand what these treatment options involve concerning risks, treatment options and possible outcome, according to the principles of risk communication, and that interaction can take place, so that the preferences and values of both patient and physician can be shared, to support the process of SDM concerning adjuvant chemotherapy for colon cancer patients.

From the patient physician experience journey, combined with the theoretical framework, the IPD was created through multiple iteration steps, involving physicians, patients, and potential patients. The IPD allows the patient to find general information about adjuvant chemotherapy, and triggers the patient to think about their preferences and values concerning quality of life, which can be scored and communicated with the treating physicians. Added to that, the patient and physician are both enabled to gain insights from prediction information about life expectancy.

The IPD allows both patient and physician to be aware of the same amount of information and to understand what this information entails, which, according to the literature, is the condition to be able to implement the SDM process properly.

Because this project was carried out in the name of IKNL, the IPD was created for a small fraction of the numerical information database they possess, with the purpose to be able to project the principle of the IPD on their entire database to help as many cancer patients as possible with their valuable information.

When patients are more involved in making treatment decisions based on the process of SDM, it may have influenced the patient experience in a positive was, leading to a better quality of life of the patient. When the quality of life of the patient is improved due to the provided care, it can be said that the quality of care has also improved.