Nocebo belief and attitudes towards side effect disclosure: A general population-based online survey in Europe and North America.

ABSTRACT

BACKGROUND: With evidence for large nocebo effects in pain, guidelines for nocebo-minimizing strategies regarding side effect disclosure are emerging. While the ethical implications and effectiveness of such strategies have been the subject of investigations, the perspective of healthcare users are missing despite the stakes for patient autonomy. METHODS: In an online survey, 2766 adults (≥18 years) from a general population sample in Europe and North America responded to questions related to nocebo familiarity, nocebo beliefs and attitudes towards side effect disclosure. RESULTS: Only 474 (17%) were familiar with nocebo terminology, while 1379 (50%) were familiar with the concept of nocebo side effects. Belief in nocebo side effects was not well-established; 738 (31%) agreed that side effect information could increase side effect occurrence. Nocebo belief was associated with more negative attitudes towards side effect disclosure and 1962 (73%) indicated that positive framing was an acceptable way of disclosing side effect information. In general, the majority of participants (65-76%) held positive attitudes towards the disclosure of all potential side effects and 2309 (84%) favoured patient autonomy over nonmaleficence. Although the general patterns were similar in the European and North American sample, the latter showed stronger nocebo belief and stronger positive attitudes towards side effect disclosure. CONCLUSIONS: The study found a consistent, moderate association between nocebo belief and attitudes towards nondisclosure, alongside positive attitudes towards the use of framing. Together with the discovered discrepancy between nocebo familiarity and nocebo belief, these findings have implications for the implementation of nocebo education and risk framing strategies. SIGNIFICANCE STATEMENT This is the first large-scale, general population-based study to contribute to the scientific discussion about nocebo side effects from the perspective of healthcare users. The findings have implications for the discussion on how to handle the medical and ethical problem of nocebo side effects in clinical practice.