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Table 4 Whether or not the ‘Kidney Failure Decision aid’ meets the needs and preferences identified in the focus group data

From: Development of an online patient decision aid for kidney failure treatment modality decisions

Topic

Needs and preferences identified in focus groups

Incorporated in the PtDA?

Education and decision-making

Don’t forget the person behind the patient*

Paper hand-out sheet, interactive website and summary sheet contain components that facilitate conversation on the personal situation, wishes, and preferences of patients

Clearly define the patient journey and take the lead as primary practitioner*

Paper hand-out sheet contains a flowchart of the advanced CKD care pathway

Interactive website contains a chapter with information on all involved clinicians, and when the decision has to be made

Provide mentorship and guidance throughout the educational and decision-making process*

Paper hand-out sheet, interactive website, and summary sheet contain components that guide patients and clinicians in making values and preference-based decisions

Coordinate with colleagues and adjust the education based on patients’ educational needs*

No

Evaluate how well patients understand the provided information*

No

Explore how patients make their choices, and who was involved in the decision-making process*

Interactive website and summary sheet contain components that facilitate conversations on who plays an important role in making decisions

SDM

Strive for an equal patient-physician relationship*

Paper hand-out sheet, interactive website, and summary sheet explicitly mention that the decision should be made according to the principles of SDM

Facilitate patients in preference elicitation and values-clarification*

Paper hand-out sheet, interactive website and summary sheet contain components that facilitate conversation on the personal situation, wishes, and preferences of patients

Paper hand-out sheet, interactive website, and summary sheet contain components that guide patients in values-clarification and preference-elicitation

Explicitly communicate when the decision has to be made*

Paper hand-out sheet contains a flowchart of the advanced CKD care pathway

Interactive website contains a chapter with information on all involved clinicians, and when the decision has to be made

Explicitly communicate that the opinions and wishes of patients are important in the decision*

Paper hand-out sheet, interactive website, and summary sheet explicitly mention that the decision should be made according to the principles of SDM

Do not try to “sell” any treatment modality, even if they have superior medical outcomes*

Paper hand-out sheet, interactive website, and summary sheet explicitly mention that the decision should be made according to the principles of SDM

Online PtDA

Exercise caution for “informational overload”*

Paper hand-out sheet contains elements that provide guidance on what chapters of the interactive website patients should focus on most

Interactive website allows for easy navigation between chapters, saves patients’ location and answers when logging off, and provides the educational content in similarly structured chapters

Strive for collaboration, and integrate everything on one platform*

PtDA has been developed in collaboration with key stakeholders and contains educational content of nieren.nl and nierwijzer.nl, both of which are owned by the Dutch kidney patient association and are endorsed by nephrology clinicians in the Netherlands

Consider clinical practice when designing the PtDA*

PtDA has been developed for integration in established healthcare pathways without interfering with routine procedures

Pay attention to health literacy and culture*

All components of the PtDA have been written in the B1 level of the CEFRL

Outcome information

Give patients autonomy in viewing outcome information*

Patients have to actively click through disclaimers before viewing survival probabilities and hospitalisation rates

Provide tailored outcome information when possible*

Survival probabilities and hospitalisation rates have been stratified in age categories used by Dutch dialysis and kidney transplantation data registries

Provide guidance on the interpretation of treatment outcomes*

Interactive website provides information on how patient characteristics impact treatment outcomes, and encourages conversations on treatment outcomes between patient and clinicians

Pay attention to data visualization*

Outcome information has been visualised with infographics when possible

  1. PtDAPatient decision aid, SDMShared decision-making, CEFRLCommon European Framework of Reference for Languages. *Note: this is a translation from Dutch to English