ASPO Abstracts
Assessing Advance Care Planning in Individuals with Lynch Syndrome
Category: Behavioral Science & Health Communication
Conference Year: 2021
Abstract Body:
Purpose: The goal of this study is to assess knowledge and utilization of Advance Care Planning
(ACP) in individuals with Lynch Syndrome (LS), evaluate preferences regarding these documents,
and identify barriers to ACP conversations and document completion.
Methods: A mixed methods approach (quantitative survey, follow-up telephone interview) was
used to assess knowledge, preferences, and attitudes regarding ACP (n=20). This study also
assessed which ACP documents individuals already had in place and which persons an individual
made aware of the documentation and/or preferences. Data were analyzed to determine
preferences for who is responsible for initiating these conversations, identify motivating factors and
barriers to these conversations, and determine whether the current conversations are adequate to
meet the needs of this population.
Results: Participants recognized the importance of ACP and expressed interest in creating these
documents. However, knowledge and confidence about these topics were lacking, with many
participants attributing this to their young age and lack of experience. There also was a disparity in
how participants received information versus how they wished to receive information. Most
participants were informed about ACP by their experiences, while they wished to have more
guidance and one-on-one instruction from their providers. Younger participants reported not being
asked about advance directives. Participants reported that a key factor in conversations about
ACP is comfort with the healthcare provider (HCP). The provider specialty was not an important
factor in whether participants wanted to have this conversation with a HCP, rather it was their level
of trust in the provider and the nature of the patient-provider relationship.
Conclusions: Although uncomfortable, many patients want to have ACP discussions with their
providers, but frequently patients were only asked if these documents are completed with no
further discussion. We ultimately believe ACP should be included as the standard of care for all
individuals, not just those with LS, to help reduce the barriers for completion. These findings can
inform educational efforts to improve knowledge of ACP and interventional research to increase
use of ACP by individuals with
Keywords: Lynch Syndrome, Advance Care Planning, Patient Communication