What are the information priorities for cancer patients involved in treatment decisions? An experienced surrogate study in Hodgkin's disease

Abstract

A total of 165 adult patients with Hodgkin's disease (HD) were questioned following treatment to examine their perceptions of actual and desired involvement and provision of information in the treatment decision-making process. Irrespective of the degree to which patients felt they had been involved in the decision-making process and of the outcome of their particular treatment, patients who felt satisfied with the adequacy of information given were significantly more likely to feel happy with their level of participation in the overall process of decision-making (P < 0.001). As part of a strategy investigating patient priorities, patients were asked to rank a series of possible acute and late treatment-related morbidities. Counter-intuitively, the majority of long-term survivors felt early short-term side-effects were more, or equally, as important as late morbidity with respect to influencing choice of therapy. Unpredictable importance was placed by patients on side-effects such as weight gain and fatigue in relation to other complications such as infertility and risk of relapse. Patients do not necessarily share doctors' priorities in decision-making or place the same emphasis on different types of morbidity. Experienced surrogates may assist us in understanding patients' perspectives and priorities.