“You don't know what you don't know”: A qualitative study of informational needs of patients, family members, and living donors to inform transplant system metrics

Abstract

IntroductionInformational needs and potential use of transplant metrics, especially among patients, remain understudied and a critical component of the transplant community's commitment to patient‐centered care. We sought to understand the perspectives and needs of patients, family members/caregivers, living donors, and deceased donor family members.MethodsWe examined decision‐making experiences and perspectives on the needs of these stakeholder groups for data about the national transplant system among 58 participants of 14 focus groups and 6 interviews.ResultsThree major themes emerged: 1) informational priorities and unmet needs (transplantation system processes, long‐term outcomes data, prelisting data, patient‐centered outcomes, and ability to compare centers and regions); 2) challenges obtaining relevant and trustworthy information (patient burden and effort, challenges with medical jargon, and difficulty finding trustworthy information); and 3) burden of facing the unknown (stress and anxiety leading to difficulty processing information, challenges facing the transplant journey when you “don't know what you don't know”).ConclusionPatient, family member, and living donor participation in shared decision‐making has been limited by inadequate access to patient‐centered information. New metrics and patient‐facing data presentations should address these content gaps using best practices to improve understanding and support shared decision‐making.