What matters most to patients with severe aortic stenosis when choosing treatment? Framing the conversation for shared decision making

Nananda F Col, Diana Otero, Brian R Lindman, Aaron Horne, Melissa M Levack, Long Ngo, Kimberly Goodloe, Susan Strong, Elvin Kaplan, Melissa Beaudry, Megan Coylewright, Nananda F Col, Diana Otero, Brian R Lindman, Aaron Horne, Melissa M Levack, Long Ngo, Kimberly Goodloe, Susan Strong, Elvin Kaplan, Melissa Beaudry, Megan Coylewright

Abstract

Background: Guidelines recommend including the patient's values and preferences when choosing treatment for severe aortic stenosis (sAS). However, little is known about what matters most to patients as they develop treatment preferences. Our objective was to identify, prioritize, and organize patient-reported goals and features of treatment for sAS.

Methods: This multi-center mixed-methods study conducted structured focus groups using the nominal group technique to identify patients' most important treatment goals and features. Patients separately rated and grouped those items using card sorting techniques. Multidimensional scaling and hierarchical cluster analyses generated a cognitive map and clusters.

Results: 51 adults with sAS and 3 caregivers with experience choosing treatment (age 36-92 years) were included. Participants were referred from multiple health centers across the U.S. and online. Eight nominal group meetings generated 32 unique treatment goals and 46 treatment features, which were grouped into 10 clusters of goals and 11 clusters of features. The most important clusters were: 1) trust in the healthcare team, 2) having good information about options, and 3) long-term outlook. Other clusters addressed the need for and urgency of treatment, being independent and active, overall health, quality of life, family and friends, recovery, homecare, and the process of decision-making.

Conclusions: These patient-reported items addressed the impact of the treatment decision on the lives of patients and their families from the time of decision-making through recovery, homecare, and beyond. Many attributes had not been previously reported for sAS. The goals and features that patients' value, and the relative importance that they attach to them, differ from those reported in clinical trials and vary substantially from one individual to another. These findings are being used to design a shared decision-making tool to help patients and their clinicians choose a treatment that aligns with the patients' priorities.

Trial registration: ClinicalTrials.gov, Trial ID: NCT04755426, Trial URL https://ichgcp.net/clinical-trials-registry/NCT04755426.

Conflict of interest statement

NFC has received consulting fees and research contracts from various entities through her contract research organization Shared Decision Making Resources. She received independent research grants from Edwards Lifesciences, Biogen, Pfizer, and EMD-Serono, and has consulted for Janssen Pharmaceuticals. BRL has served on the scientific advisory board for Roche Diagnostics, has received research grants from Edwards Lifesciences and Roche Diagnostics, and has consulted for Medtronic. MC has received consulting fees and research funding from Boston Scientific and Edwards LifeSciences. MML has received consulting fees from Boston Scientific, Edwards LifeSciences, and Medtronics. This does not alter our adherence to PLOS ONE policies on sharing data and materials. There are no patents, products in development or marketed products associated with this research to declare.

Figures

Fig 1. Study design and sample.
Fig 1. Study design and sample.
This figure depicts the sequence of activities conducted during various stages of the study. Participants could participate in more than one study activity. Participants were enrolled through the course of the study. aNGT: Nominal Group Technique.
Fig 2. Cognitive map of patient treatment…
Fig 2. Cognitive map of patient treatment goals.
Each cluster identifies how specific treatment goals identified using the nominal group technique were grouped and labeled by a group of 38 patients during card sorting activities. Multidimensional scaling defined the spatial orientation of each specific goal and hierarchical cluster analysis guided the identification of the clusters. HF denotes heart failure. Info denotes information. QoL denotes quality of life.
Fig 3. Cognitive map of patient treatment…
Fig 3. Cognitive map of patient treatment features.
Each cluster identifies how the specific treatment features identified using the nominal group technique were grouped and labeled by 36 patients during card sorting activities. Multidimensional scaling defined the spatial orientation of each specific feature, hierarchical cluster analysis guided the identification of clusters. QoL denotes quality of life.

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