DEVELOPMENT AND EVALUATION OF A WEB-BASED DECISION AIDFOR MEN BETWEEN THE AGE OF 65 AND 75 WITH LOCALIZED PROSTATE CANCER IN MAKING A TREATMENT CHOICE

Traditionally, a doctor is required to determine the patient’s diagnosis on the basis of which a treatment choice will be made. The doctor, as expert, is expected to know about the treatment options appropriate for the patient. In the past decade, the doctor-patient relationship has shifted. Patients are more articulate, critical and self-conscious. Medical advice given by a doctor is often not taken for granted but will be weighed up based on the pros and the cons. Most ‘postmodern’ patients want to be involved in the management of the decision and want to take a deliberated choice in collaboration with their doctor. In order to collaborate in the decision making process, patients need comprehensive evidence-based information and support in the process of decision making. Therefore, the doctor will, at a minimum, inform the patient about the ‘objective evidence’ such as treatment options and harms and benefits of each option. The patient additionally will provide information on ‘subjective evidence’ such as his/her values, life style and preferences. This ‘subjective evidence’ plays an important part in the final decision. For example, some patients will favor a less invasive approach and decrease the chance of cure as quality of life is of more importance to them. Others will accept side-effects at all costs to increase their chance of cure.  Carefully listening to the patient with the disease therefore becomes more important.

Twenty years ago finding one malignant cell in the prostate was a motive to immediately remove the complete prostate gland. Nowadays, we see more alternative approaches to the same problem such as active monitoring, external beam radiation therapy or brachytherapy. Each option holds specific side-effects and should be weighed based on personal values and patients’ life style.

A shared decision making communication style seconded by a decision aid can support patients to become actively involved in their treatment choice for localized prostate cancer.

In this doctoral dissertation we focused on the usability and actual use of a web-based decision aid for patients with localized prostate cancer. A first phase is a pilot test of the web-based decision aid which gained confirmation that within a group of 65 to 75 patients, less frequent internet users need guidance or supplemental materials such as a paper version when using the web-based decision aid. For frequently internet users with internet access at home a web-based tool can stand alone. A second phase is the implementation test of the web-based decision aid. A field-testing research in a real-life setting confirmed that patients between 65 and 75 years can use the web-based decision aid. The participants reported an extensive use of technology features such as comparative tables and a tailoring function tool. In this doctoral dissertation, we were particularly interested in the actual use of the web-based decision aid by men between 65 and 75. Web-log analysis showed that pages with information on the treatment options for localized prostate cancer were most frequently accessed and where most time was spent on. However, a disparity in use of the web-based decision aid was found showing the need for an individually adaptable web-based decision aid design. Furthermore, we wanted to explore the potential of using comparative tables in a web-based decision aid. Results showed that most patients followed a similar pattern of comparing treatment options. The options that were viewed as the last, corresponded with the final treatment choice proving the essential contribution of comparative tables in the decision making process.

After detailed reporting on each of these topics, the dissertation concludes with a synthesis of the three stages. Furthermore, limitations and future perspectives for research and practice are highlighted.