Testing the added value of decision aid components to facilitate patients informed decision making about dialysis treatment options

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 was carried out to examine the added value of components of pDAs over and above the provision of evidence-based information on people’s decision making in the context of established renal failure whilst developing the Yorkshire Dialysis Decision Aid (YoDDA).. Methods Five linked, web-based studies using experimental designs to test the added value of decision guidance, information structure, information categorisation, value clarification, and patient narrative components, over and above evidence-based, accessible information. Participants were staff and students from 30 UK Universities. Measures included: information utilisation; questionnaires assessed treatment choice, decisional conflict, knowledge, values, perception of risk, others’ opinion, and resource acceptability. Results Study 1 (n = 138) the addition of decision guidance 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 consistency between values and choice more than treatment attribute tasks or no tasks. Study 4 (n = 406) providing a decision-outcome narrative, and a decision-guidance plus decision-outcome narrative, encouraged participants to choose the treatment described by the patient than groups without a narrative. Two 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. Conclusions Decision guidance statements, information structure and information categorisation enable people to evaluate more details about treatment options than the provision of evidence-based, accurate, 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.