Lung cancer treatment decisions: patients’ desires for participation and information

This study examined responses of 21 lung cancer outpatients to questions about their desired and actual levels of involvement in treatment decisions, and about information needed for treatment decision‐making. A ‘treatment trade‐off’ interview was used to assess patients’ preferences for hypothetical treatment options. Desired roles in decisions are examined in relation to treatment preference and information needs. Forty‐three percent of patients recalled desiring an active/collaborative role in their real treatment decision. For 29% of patients, there was a discrepancy between their recalled desired role and their recalled actual role; in each of these cases the patient had been less involved in the decision than they had desired. At the time of the interview (mean 26 months post‐treatment), 57% of patients desired an active or collaborative role in treatment decisions. The majority of patients rated the following types of information as ‘essential’ to treatment decisions: details of the treatment regimen, early and late side‐effects, survival, and effects of treatment on disease symptoms. The data suggest that: we should be attentive to the individual's desired role in treatment decisions at each step of care to avoid a mismatch between desired and actual involvement; desired role in decision‐making does not predict treatment preference; and patients generally want a wide variety of information on treatment options in order to participate in treatment decisions. Copyright © 1999 John Wiley & Sons, Ltd.