Under what conditions do patients want to be informed about their risk of a complication? A vignette study.

BACKGROUND: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. OBJECTIVE: To investigate patients' preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. DESIGN: Vignettes study. SETTING: Department of Gastroenterology, Academic Medical Centre, the Netherlands. PATIENTS: 810 consecutive colonoscopy patients. INTERVENTION: A home-sent questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. MAIN OUTCOME MEASUREMENTS: Wish to be informed and importance of information. RESULTS: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients' information preference was also related to age, mood and coping style. LIMITATIONS: Difficulty of vignettes. CONCLUSIONS: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested.

Doctor's views on disclosing or withholding information on low risks of complication.

BACKGROUND: More and more quantitative information is becoming available about the risks of complications arising from medical treatment. In everyday practice, this raises the question whether each and every risk, however low, should be disclosed to patients. What could be good reasons for doing or not doing so? This will increasingly become a dilemma for practitioners. OBJECTIVE: To report doctors' views on whether to disclose or withhold information on low risks of complications. METHODS: In a qualitative study design, 37 respondents (gastroenterologists and gynaecologists or obstetricians) were included. Focus group interviews were held with 22 respondents and individual in-depth interviews with 15. RESULTS: Doctors have doubts about disclosing or withholding information on complication risk, especially in a risk range of 1 in 200 to 1 in 10,000. Their considerations on whether to disclose or to withhold information depend on a complicated mix of patient and doctor-associated reasons; on medical and personal considerations; and on the kind and purpose of intervention. DISCUSSION: Even though the degree of a risk is important in a doctor's considerations, the severity of the possible complications and patients' wishes and competencies have an important role as well. Respondents said that low risks should always be communicated when there are alternatives for the intervention or when the patient may prevent or mitigate the risk. When the appropriateness of disclosing risks is doubtful, doctors should always tell their patients that no intervention is without risk, give them the opportunity to gather all the information they need or want, and enable them to detect a complication at an early stage.