Purpose: Patient decision aids (pDAs) are complex interventions designed to help patients make informed decisions by a) reducing bias and b) encourage active thinking. This research examined the added value of decision aid components, over and above the provision of evidence-based information, on people’s decision making about dialysis options for established renal failure whilst developing the Yorkshire Dialysis Decision Aid (YoDDA).
Method: Staff and students from 30 UK Universities participated in five linked, web-based studies using experimental designs to test the added value of decision guidance, information structure and categorisation, value clarification, and patient narrative components, over and above evidence-based, accessible information. Electronic tracking and questionnaires assessed: information utilisation, treatment choice, decisional conflict, knowledge, values, perception of risk, others’ opinion, and resource acceptability.
Result: Study 1 (n = 138) adding decision guidance (decision tree diagram + choice talk statements) to an information aid increased knowledge and reduced mixed feelings about the decision. Study 2 (n = 348) structuring treatment option information in parallel, and by attribute, with an even categorisation (2 haemodialysis options; 2 peritoneal dialysis options) supported people’s dialysis decision making in a better way than treatment option information presented sequentially and with an uneven categorisation (1 hospital option; 3 home options). Study 3 (n = 351) using value-clarification tasks about the importance of lifestyle activities (work, holidays, family, etc) rather than treatment attributes (location, blood, overnight, etc) enhanced the value-choice consistency more than treatment attribute tasks or no tasks. Study 4 (n = 406) providing a decision-outcome narrative, or a decision-guidance plus a decision-outcome narrative, encouraged participants to choose the treatment mentioned in the narrative than groups without a narrative. Two different decision-outcome narratives counterbalanced this effect. A decision-guidance narrative alone did not affect choices. Study 5 (n = 171) using a lifestyle activity value-clarification task may counterbalance the affect of narratives on choices more than other treatment attribute value-clarification tasks.
Conclusion: Explicit decision representation and guidance, and information structure and categorisation, enable people to evaluate more treatment option details before making a decision than providing evidence-based and accessible information alone. Patient narratives are more likely to bias participants’ choices than facilitate informed decision making. Value-clarification tasks’ contribution to pDAs may depend on the type of task and the timing of pDA evaluation.