Medical tests: women's reported and preferred decision‐making roles and preferences for information on benefits, side‐effects and false results

Objective  To determine women's preferences for and reported experience with medical test decision‐making. Design  Computer‐assisted telephone survey. Setting and participants  Six hundred and fifty‐two women resident in households randomly selected from the New South Wales electronic white pages. Main outcome measures  Reported and preferred test and treatment (for comparison) decision‐making, satisfaction with and anxiety about information on false results and side‐effects; and effect of anxiety on desire for such information. Results  Overall most women preferred to share test (94.6%) and treatment (91.2%) decision‐making equally with their doctor, or to take a more active role, with only 5.4–8.9% reporting they wanted the doctor to make these decisions on their behalf. This pattern was consistent across all age groups. In general, women reported experiencing a decision‐making role that was consistent with their preference. Women who had a usual doctor were more likely to report experiencing an active role in decision‐making. More women reported receiving as much information as they wanted about the benefits of tests and treatment than about the side‐effects of tests and treatment. Most women wanted information about the possibility of false test results (91.5%) and test side‐effects (95.6%), but many reported the doctor never provided this information (false results = 40.0% and side‐effects = 31.3%). A substantial proportion said this information would make them anxious (false results = 56.6% and side‐effects = 43.1%), but reported they wanted the information anyway (false results = 77.6% and side‐effects = 88.1%). Conclusions  Women prefer an active role in test and treatment decision‐making. Many women reported receiving inadequate information. If so, this may jeopardize informed decision‐making.