WHAT ARE THE INFORMATION PRIORITIES FOR CANCER-PATIENTS INVOLVED IN TREATMENT DECISIONS - AN EXPERIENCED SURROGATE STUDY IN HODGKINS-DISEASE

A total of 165 adult patients with Hodgkin's disease (HD) were questio ned following treatment to examine their perceptions of actual and des ired involvement and provision of information in the treatment decisio n-making process. Irrespective of the degree to which patients felt th ey had been involved in the decision-making process and of the outcome of their particular treatment, patients who felt satisfied with the a dequacy of information given were significantly more likely to feel ha ppy with their level of participation in the overall process of decisi on-making (P<0.001). As part of a strategy investigating patient prior ities, patients were asked to rank a series of possible acute and late treatment-related morbidities. Counterintuitively, the majority of lo ng-term survivors felt early short-term side-effects were more, or equ ally, as important as late morbidity with respect to influencing choic e of therapy. Unpredictable importance was placed by patients on side- effects such as weight gain and fatigue in relation to other complicat ions such as infertility and risk of relapse. Patients do not necessar ily share doctors' priorities in decision-making or place the same emp hasis on different types of morbidity. Experienced surrogates may assi st us in understanding patients' perspectives and priorities.