br One way ANOVAs with a post hoc Bonferroni correction
One-way ANOVAs with a post hoc Bonferroni correction for multiple comparisons were conducted to compare CISP according to AOPSS items that had a 4-point “continuous” scale (1= Never to 4 = Always). Intense seekers were significantly more likely to report receiving confusing or contradictory information [F(4, 2096) = 15.451, p < .001], not knowing who to ask questions about their health problems [F(4, 2096) = 29.414, p <.001], being least satisfied with care coordination [F(4,1648) = 23.052, p <.001], when compared to the four CISP groups. When asked if they Pertussis Toxin knew whom to talk to when they had questions or concerns, intense seekers (43%) were least likely to know where to find the support they needed.
4. Discussion and conclusion
A diagnosis of cancer often triggers fears, uncertainty, and distress that is conventionally thought to be alleviated by
Fig. 1. Cancer Information-Seeking Preferences.
AOPSS Items by Cancer Information-Seeking Preferences (N = 2,142).
Intense Complementary Fortuitous Minimal / Guarded
seekers seekers seekers Uninterested /Avoiders
AOPSS Items Yes Yes Yes Yes Yes
Comfortable talking with providers about complementary/alt therapies (if 50%*** 87% 91% 90% 82%
Note: p-values were obtained from the chi-square distribution associated with adjusted standardized residuals for each cell.
cancer-related information searches . In fact, much of the literature to date on adaptive coping focuses on active informa-tion-seeking by patients. However, increasingly this assumption is put into question with distinct preferences having adaptive potential [18,21]. Herein, we document the prevalence of distinct cancer information-seeking preferences and their relative links to patient experiences and satisfaction with cancer care.
A key finding is that nearly 40% of a large cohort of patients having received cancer treatment within the last six months report being uninterested or purposely avoiding cancer information altogether. The prevalence of cancer information avoidance in patients is much larger than what had been previously thought - putting into question the long held clinical assumption that patients desire information when faced with a cancer diagnosis [33–35]. A recent review by Golman et al , in fact, shows that avoidance of self-relevant information is common. The authors underscore that even when information is free and likely to lead to better decisions, some individuals still purposefully avoid it [36– 39]. Obviously, when facing a serious illness such as cancer, biases in information-seeking can have deleterious effects [40,41], such as in early cancer detection phases (e.g., when the presence of a tumor is ignored) [42,43], when undergoing treatment (e.g., not acting on serious side effects)  or in the survivorship period (e.g., not following up on potential signs of a cancer recurrence). Therefore, taken together, these preferences can have profound effects not only on the patient experience with cancer but also on satisfaction with cancer care services received.
Among the 60% who reported wanting information about their cancer, intense seekers were more likely to be dissatisfied with the cancer information provided with higher agreement that they received confusing or contradictory information. Altogether, intense seekers expected more from the health care system. In contrast, the other four groups were generally satisfied with the information received. Therefore, it seems imperative to readily identify intense seekers and ensure that their particular needs are addressed in a timely fashion to optimize their cancer care experience. As for information avoiders, further research would elucidate how this group may benefit from further engagement in health care to ensure that, even if their health care experience is satisfactory, that health-related outcomes are kept in check.
CISP were also significantly associated with some key socio-demographic characteristics. More men report being uninterested or actively avoiding cancer information, a finding also echoed in
the qualitative work of Leydon et al. . Despite similar internet usage rates, females are significantly more likely to seek health information online than males, supporting our findings that more males tend to avoid cancer information which, in turn, could lead to worse patient-reported outcomes . More work needs to address these sex differences and tailor health information and communication accordingly. Avoiders also tended to be less educated with active seekers reporting higher educational attainment. Informational interventions that offer distinct content and strategies according to educational levels need to be tested to ensure that they engage users rather than cater to the lowest common denominator of literacy (e.g., grade 6 level).