160 | Chapter 6 Table 3. Overview of the development of the PDA per phase, and quotes Patients Physicians Phase 1 • Survival is the most important outcome • Side-effects should be the leading factor in choosing type of treatment • Receiving the diagnosis is overwhelming and stressful • Most received information was too extensive and complex • 70% of the patients did not feel well informed after counseling • 50% of the patients was not aware surgery could be a potential treatment • All agreed that a PDA would be a valuable addition for the decisionmaking process • The main goal should be to avoid multimodality treatment to reduce treatment side effects Phase 2 • 12/14 (86%) stated there was too much text, which hampered focus and the use of the PDA • 8/14 (57%) mentioned that the used level of language was too complex • All patients stated that more graphs and videos would make the decision aid easier and more accessible for everyone CE: language level was too complex to be accessible to all. Also, the amount of text was too much, and the use of graphs and videos was too limited SLP: the amount of information was rated good, but more focus is needed on the management of potential side effects PT: information on nerve palsy after neck dissection is lacking HNS en RO: both wished to add more information regarding side effects and risks related to the treatment of the other specialty Overall: The decision aid should be adjusted for HPV status (positive, negative, and unknown)
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