DISCUSSION
This is one of the first studies to report on SDM experiences around AF
ablation, perceptions of decision quality, and opportunities to improve
quality from the perspective of patients who have undergone ablation and
clinicians routinely involved in decision-making and care surrounding AF
ablation. Participants reported generally high perceptions of decision
quality and low decision regret. However, quantitative and qualitative
data also illustrated gaps in information, patient agency, and alignment
of goals in the decision-making process. Although clinicians verbally
provided information, occasionally complemented by written information
and articles, and encouraged patient engagement during consultations,
patients and clinicians alike acknowledged the need for information
resources and decision aids in more accessible, digestible formats.
Moreover, the study highlighted gaps between patient goals and realistic
expectations following an ablation; specifically, many patients hoped to
be able to discontinue all medications post-ablation, but clinicians
supported that in most cases anticoagulants and other medications may
need to continue. Together, these findings highlight the need for a
decision aid surrounding AF ablation. Towards this end, we also reported
on the preferred content, format, and delivery of a decision aid focused
on AF ablation suggested by participants.
Decision aids are intended to help translate information about the
likelihood of different health outcomes for different patient
populations, as well as the goals and subjective experiences of
patients, in ways that are accessible in routine care; the goal is to
provide informed and patient-centered
decisions.23Importantly, decision aids support (but do not replace) the
patient-provider relationship. Decision aids objectively improve patient
knowledge and agency in decision-making, as well as patient feelings of
being informed, particularly when they include detailed
information.31IPDAS is a widely recognized set of standards for developing decision
aids that emphasize the importance of understanding patient and other
stakeholder needs and preferences. However, a recent systematic review
found that only half of the studies describing decision aid development
included end users in efforts to understand the problem, and only
one-third included end users in prototyping and
redesign.32
To ensure decision aids are usable and useful for end users, IPDAS
recommends defining the scope, purpose, and target audience of the
decision aid, establishing a steering group of patients and experts, and
conducting several rounds of user-centered design activities including
prototyping, testing, and redesign with end
users.33An ongoing challenge of user-centered design is balancing end user
suggestions with evidence that user-suggested features may actually be
counterproductive. For example, participant suggestions to include
testimonials in our study run counter to some evidence that testimonials
introduce significant bias towards one treatment option over another
because decision-making is strongly influenced by self-identification
and other emotional
experiences.22Typically, decision aids aim to provide information without persuading,
and if included, testimonials need to be carefully selected and balanced
to avoid portraying one option more or less favorably than another.
In the context of AF, relatively little attention has been paid to
supporting shared decision-making around symptom and rhythm management
compared to selecting an anticoagulant. Studies of decision aids for
anticoagulant selection show they improved patient satisfaction in
treatment decisions, clinician communication and satisfaction, and
reduced decision
conflict.34,35Prior work focused on anticoagulation may provide useful starting points
for shared decision-making in other areas of AF care. Common design
elements in anticoagulation decision aids include: (1) consideration of
the patient’s individual patient risk factors, such as age, sex, and
past medical history, (2) predicted risks of events of interest, such as
bleeding or stroke, (3) visualizations, especially 100 person icon
arrays to portray probabilities of outcomes of interest, (4) and surveys
assessing patient values and priorities when choosing a treatment option
(i.e. costs, side
effects).34–37Most decision aids are web-based, contain interactive visualizations and
videos, and include the option to print a decision summary or send it to
a clinician or other recipient. Many of these elements were echoed in
the suggestions of participants in our study, supporting the inclusion
of these elements in future decision aids.
Strengths of this study include alignment with IPDAS recommendations to
include end users in understanding the problem space as a first step in
decision aid design, as well as the use of standardized scales to
objectively measure multiple aspects of decision quality and regret. A
limitation of this study is limited generalizability, as this study was
conducted with a small convenience sample of patients and clinicians
recruited from a single hospital. Of note, the hospital serves a diverse
patient population with respect to age, race/ethnicity, and language,
which is reflected in our patient sample. Nonetheless, future work
should seek to expand the investigation of decision quality surrounding
AF ablation in larger, more representative samples of patients,
clinicians, and other key stakeholders. These interviews were conducted
up to 18 months after the decision, which might have led patients to
underestimate the decisional conflict they experienced while making the
decision. In addition, we did not interview patients who considered
ablation but decided against it. These two limitations together may mean
that levels of decisional conflict are substantially higher among
patients who are actually encountering this decision.