Redesigning a Serious Illness Conversation Guide: A Mixed-Methods Community-Engaged Revision Process.

Area of Science:

• Medical Communication
• Health Equity
• Patient-Centered Care

Background:

• The Serious Illness Conversation Guide offers a framework for discussing values, goals, and prognosis in serious illness.
• Previous implementations and studies highlight its utility across various clinical settings and patient groups.
• A need for enhanced inclusivity and accessibility for diverse populations was identified.

Purpose of the Study:

• To refine the Serious Illness Conversation Guide for greater inclusivity and accessibility.
• To incorporate feedback from diverse patient and caregiver advisors.
• To improve the framework for serious illness conversations.

Main Methods:

• A community-engaged, iterative revision process was utilized.
• Feedback was gathered from national experts in health equity and inter-professional clinicians (n=59).
• Patient and caregiver advisors (n=11) from diverse racial/ethnic backgrounds refined and evaluated changes through focus groups, interviews, and surveys.

Main Results:

• Major revisions were made to the Guide's introduction, prognosis, illness understanding, and critical abilities sections.
• Key themes included building trust, sensitive prognosis communication, balancing hope, and empathic connection.
• The revised Guide was perceived as sensitive to culture and identity (8/9 advisors) and not emotionally upsetting (9/9 advisors).

Conclusions:

• Revisions successfully enhanced the Guide's inclusivity and accessibility.
• The updated Guide emphasizes hope, partnership, and alignment.
• Patient and caregiver advisors found the revised Guide to be emotionally safe and acceptable.