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Abstract
Conclusions
An
objective measure of treatment success meaningful to survivors,
physicians and regulators is, at present, elusive and may not exist.
Ideally, future trial design would place equal weight on quantitative
and qualitative measures and include information about goals of
treatment.
Highlights
- •
- Concepts important to ovarian cancer survivors include communication with one's physician and expectations changing with position along the treatment continuum.
- •
- While all survivors identify communication with one's physician as essential, only 14% reported having such communication prior to treatment decisions.
- •
- Survivors prefer an individualized approach to care focusing on quality of life instead of chronologic increments of survival.
Objectives
A
survey of the Ovarian Cancer National Alliance revealed a communication
gap between physicians and survivors. This qualitative study explored
the space between perceptions in hopes of better defining treatment
endpoints meaningful to treating physicians and their patients.
Methods
A
focus group of ovarian cancer survivors (n = 22) was assembled via the
survivor support network SHARE. A physician-guided session explored
expectations of treatment, perceived outcomes, toxicity thresholds and
decision making. The session was recorded, transcribed and coded. Common
themes were identified and used to perform intra-case analysis by two
independent reviewers.
Results
The
main themes identified were barriers to communication, importance of
frequent communication between patient and physician regarding goals,
and expectations of treatment changing with position along the treatment
continuum. One hundred percent of participants identified communication
with their physician as an essential element in determining treatment
course. However, only 14% reported having a discussion about goals,
values and perceptions with their physician preceding treatment
decisions. Participants reported that the terms progression free and
overall survival held minimal significance for them and instead they
preferred an individualized approach to care focusing on quality of
life. Many women underreported side effects with reasons ranging from
fear of dose reductions and additional tests to forgetting about
symptoms due to anxiety.
Conclusions
An
objective measure of treatment success meaningful to survivors,
physicians and regulators is, at present, elusive and may not exist.
Ideally, future trial design would place equal weight on quantitative
and qualitative measures and include information about goals of
treatment.
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