Disclosing statistical uncertainty associated with personalized quantitative cancer risk information: Effects on risk perceptions and cancer worry

Ruben Vromans, Lisanne van Goor, Steffen Pauws

Research output: Contribution to conferenceAbstractScientificpeer-review

Abstract

Introduction: Nowadays, there is an increased availability of online health risk calculators for people to access. These risk calculators provide people with personalized risk estimates of experiencing a medical disease by taking into account characteristics that are unique to an individual person (e.g., age, lifestyle, medical history). Although personalized risks seem to be more relevant and useful for medical decision-making than generic risks, they are intrinsically imperfect and inherently uncertain, arising from the unpredictability of future events (i.e. aleatory uncertainty) and from limitations in the reliability, credibility, and accuracy of probability estimates or their applicability to a specific person (i.e. epistemic uncertainty).
However, whether epistemic uncertainty around personalized risk estimates should be communicated to people is a topic of debate. Some scholars believe that statistical uncertainty around personalized risk estimates should always be disclosed to people for ethical reasons. Others believe that such uncertainty information may overwhelm people and lead to ambiguity-averse psychological responses, consisting of undesired outcomes such as heightened perceptions of risk, fear, anxiety, and emotional distress, which in turn can prevent people from taking action. However, systematic knowledge about the effects of communicating uncertainty associated with personalized and generic risk information is currently lacking. Therefore, in this pre-registered study (https://osf.io/xbv4m?view_only=83bc7635ebd148678545610784203f88), we (1) tested whether the effects of communicating uncertainty on risk perceptions and cancer worry depend on the type of risk that is being communicated (personalized vs. generic cancer risk estimates), and (2) explored the mediating role of perceived credibility.

Methods: Participants from a Dutch convenience sample (N=239, 82.0% women, mean age=56.2 (SD=6.6), range=45-75 years) were randomized to a 2 [Type of risk: personalized, generic] x 2 [Uncertainty: yes, no] between-subject design. All participants read a hypothetical scenario of a person (with information about that person’s age, lifestyle, medical, and family history) visiting a webpage of the Netherlands Cancer Institute for knowing his/her risk of developing colorectal cancer. Half of the participants used an online risk calculator (a Dutch version of the NCI Colorectal Cancer Risk Assessment Tool) by entering personal characteristics of the hypothetical person and receiving results that were then displayed (“Your personalized risk of developing colon cancer in your lifetime is 9%”). The other half did not use a risk calculator and only saw the generic risk of colon cancer (“The general risk of developing colon cancer in your lifetime is 9%”) displayed on the webpage. Furthermore, half of the participants received uncertainty information through a range estimate (“5% to 13%”), and the other half received no uncertainty information by using a point estimate (“9%”). All participants received the risk information (and associated uncertainty information) numerically and visually (bar chart).
Perceived colon cancer risk was measured with two items (e.g. “If I received these results, I would feel that I’m going to get colon cancer.”, α=.89), colon cancer worry was measured with four items (e.g. “If you received these results, to what extent would you feel worried about developing colon cancer?”, α=.95), and perceived credibility with two items (e.g. “How much would you trust the communicated risk estimate?”, α=.93). All items were measured on 5-point Likert scales. Health literacy (Short Assessment of Health Literacy) and subjective numeracy (Subjective Numeracy Scale) were included as covariates in a MANCOVA.

Results: People who received personalized cancer risk estimates reported lower risk perceptions (p<.001, η2=.146) and cancer worry (p<.001, η2=.077) than people who received generic cancer risk estimates. However, communicating epistemic uncertainty led to heightened risk perceptions (p=.004, η2=.035), but only for personalized risks and not for generic risks. Such an interaction trend was also found for cancer worry, but this was not significant (p=.055, η2=.016). Exploratory mediation moderation analysis showed that the effects were not mediated by perceived credibility.

Conclusion: This study showed that disclosing epistemic uncertainty associated with personalized (and not generic) cancer risk information may be psychologically aversive, by heightened risk perceptions. Optimal methods for communicating uncertainty for individualized disease risk information remain to be determined, as well as the impact of communicating uncertainty information on medical decision-making.
Original languageEnglish
Publication statusPublished - 2023
EventEtmaal van de Communicatiewetenschap - Enschede, Netherlands
Duration: 2 Feb 20233 Feb 2023
Conference number: 25

Conference

ConferenceEtmaal van de Communicatiewetenschap
Country/TerritoryNetherlands
CityEnschede
Period2/02/233/02/23

Keywords

  • Uncertainty
  • Risk communication
  • Ambiguity aversion
  • Personalization
  • Risk prediction models
  • Worry
  • Risk perception

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