Co-designing The Prime Tool To Empower People Living With Dementia And Their Carers To Initiate Deprescribing Conversations

• By: AILABOUNI, Nagham (University Of Queensland)
• Co-author(s): Dr Leila Shafiee Hanjani (University Of Queensland, Brisbane, Australia)
  Dr Kristie Weir (University of Bern , Bern, Switzerland )
  Dr Emily Reeve (Monash University , Melbourne, Australia )
  Professor Nicole Brandt (University of Maryland , Baltimore , United States of America )
  Mr Eric Tao (University of Maryland , Baltimore , United States of America )
  Dr Nagham Ailabouni (University Of Queensland, Brisbane, Australia)
  
• Abstract:

  Background: The process of shared decision-making about deprescribing (reducing or stopping potentially inappropriate medications) between people living with dementia and their carers (consumers), and clinicians, is complex.
  
  Objective: To co-design a consumer-centric, educational tool to empower people living with dementia and their cares to initiate a deprescribing conversation with their HCP.
  
  Methods: We formed a stakeholder steering group (SG) consisting of 6 consumers and clinicians (two geriatricians, a general medicine clinician, a nurse practitioner, and a social worker) from Australia and the United States. Five one-hour SG meetings were held. These involved: 1) Introductions and familiarisation; 2 & 3) selecting key elements and co-designing the PRIME tool (using a baseline draft tool based on an existing validated patient questionnaire and previous work of members of the research team); 4) pilot testing an interview guide to test the usability and comprehensibility of the PRIME tool; and 5) co-designing the implementation of the PRIME tool in real-life practice.
  
  Results: We have co-designed the PRIME tool which consists of three main sections (background; reflection; call to action). Each section consists of various key elements selected by the SG. For example, consumers suggested including “key phrases” to prompt a deprescribing conversation and designated spaces to reflect and write down medicines they would like to discuss with their clinician. We have conducted one-to-one semi-structured interviews and a focus group session with 35 participants (people living with dementia, carers, and clinicians) to determine the usability and comprehensibility of the PRIME tool. Iterative changes were made to improve the content and layout of the tool. With feedback from the SG, we have planned future steps which involve pilot-testing the implementation of the tool in real-life practice.
  
  Discussion: The PRIME tool draft was co-designed with comprehensive input of an engaged international stakeholder SG. We tested the usability and comprehensibility of the tool by analysing feedback from 35 people living with dementia, carers and those who care for them.
  
  Conclusion: Consumers using the PRIME tool may be more empowered to initiate deprescribing conversations with their clinician. Future studies will involve further refining and pilot testing of the tool in real-life clinical practice.