Information and participation in decision-making about treatment: a qualitative study of the perceptions and preferences of patients with rheumatoid arthritis.

Objectives: To elicit the perceptions and preferences of patients
with rheumatoid arthritis regarding information and participation
in treatment decision-making. To analyse the patients’ narratives
on the background of the ethical discourse on various approaches to
treatment decisionmaking. Design: In-depth interviews with themes
identified using principles of grounded theory. Participants: 22
patients with long-standing rheumatoid arthritis. Main outcome
measures: Qualitative data on patients’ perceptions and preferences
regarding information and participation in decision-making about
treatment. Results: Decision-making about treatment has been
described by the patients as a process consisting of different
stages with shifting loci of control and responsibility. Patients
initially received one treatment recommendation and were not aware
of alternative treatment options. Those participants in this study
who wanted information about negative effects of a treatment cited
‘‘interest in one’s own health’’ and the potential ‘‘use of
information’’ as reasons for their preference. The physicians’
expert knowledge and clinical experience regarding the effects of
medication were cited as arguments by patients for a treatment
recommendation. Conclusions: The patients’ accounts of
decision-making about treatment differ from models of
physician–patient relationship that have been put forward in
ethical discourse. These differences may be relevant with respect
to the starting point of an ethical analysis of treatment
decision-making. Patients’ accounts with respect to a lack of
information on treatment alternatives point to ethically relevant
challenges regarding treatment decision-making in clinical
practice.