br Corresponding author at Department of Oncology and Ingram
* Corresponding author at: Department of Oncology and Ingram School of Nursing, McGill University, Canada.
E-mail address: [email protected] (C.G. Loiselle).
1 Christine and Herschel Victor/Hope & Cope Research Chair in Psychosocial Oncology.
their own care and their empowerment should take center stage [7,8]. Benefits associated with the consideration of their needs and preferences in health matters include improvements in the quality of care provided, better outcomes and increased patient satisfac-tion [9–12].
According to patients’ preferences, two lines of research have documented their relative desire to be involved (or not) in cancer-related decisions  and individual differences in seeking (or avoiding) cancer information [14–17]. Cancer information-seeking preferences (CISP) are now suggested to affect illness self-management, treatment decision-making, symptom monitoring, and patient-reported cancer outcomes [14,16,18,19]. However, research has yet to report on the nature of these CISP and their prevalence in large samples of individuals affected by cancer.
1.1. Health information-seeking behavior
Patient information-seeking behaviors have been defined as the purposive search for health-related information to satisfy a query . Based on further research, this 118-92-3 definition was expanded to include self-regulatory strategies that vary according to patients’ representations of their health status and needs, as well as reasons to engage in the search for health information .
There is a myriad of situations when health or illness information can be very useful to individuals . In fact, nearly 80% of Americans and 74% of Canadians report having searched online for health-related topics in the past month [22,23], with the three most frequently accessed topics being medical problems, nutrition, and exercise. The benefits of individuals’ proactive behaviors pertaining to health, including informational searches, have been underscored by multiple studies (Vahdat et al., 2014 for a review) . These include higher quality of life, reduced anxiety, more positive and direct communication with the health care team, health-related empowerment, and enhanced decision-making processes, and more positive health outcomes .
In terms of individual preferences for health information, an important line of research stems from the work of Suzanne Miller [25–27] who has documented two distinct behaviors, namely active search (coined monitoring) or information avoidance (called blunting). Miller has shown that these have differential adaptive value in responding and adjusting to health threats. Mayer et al. (2007) further documented contributors to information avoidance that include older age, lower education and income, being unmarried, not working full-time, not having a regular primary health professional, limited access to the internet and no assistance from significant others .
My own program of research has moved beyond the informa-tion seeking dichotomy (i.e., monitoring/blunting) and actually found five rather than two distinct motives that account for differential health information-seeking behaviors . Using Self-Evaluation Theory (SET) , which posits that people vary in their motivation to learn more themselves, I explored if Self-Evaluation Theory's propositions could apply to a health context where individuals may show differential motives in the search for self-relevant health or illness information . Indeed, I found that, beyond “objective self-evaluation” which includes accurate self-assessment and self-verification (i.e., seeking confirmatory health information), certain individuals favor self-protection to guard from aversive information or use self-enhancement motives to search for positively-laden health information [14,29]. Subse-quently, we undertook work with an oncology-focused population as we reasoned that cancer – considered a serious health threat to one’s health - would enact differential information-seeking motives [15,16]. Our qualitative work included the conduct of 8 focus groups and 30 in-depth interviews with individuals with various cancer diagnoses. The initial five patterns of information-seeking preferences were further confirmed with more delineated descriptions (these were coined intense, complementary, fortu-itous, minimal or guarded) [15,16]. Three types of active search were described and two types of information avoidance were further delineated. More specifically, active search includes: (1) Intense seekers who are found to look for as much cancer information as possible on their own; (2) Complementary seekers who seek more cancer information to add to what they already know; (3) Fortuitous seekers who searched for information from others diagnosed with cancer to compare with their own situation. And among the two types of non-seekers , (4) Minimal/ uninterested seekers who do not seek cancer information on their own – preferring to focus on other things in their lives; and (5) Guarded/active avoiders who find cancer to be so stressful that they prefer to bypass cancer information altogether . In addition, whereas intense seekers report relying on various sources that include “reputable” information such as in scientific reports, professional websites, etc. , complementary seekers search health information from less dynamic ones such as reference books that offer general information about cancer. Fortuitous seekers would rather casually come across information when interacting with individuals with cancer in various contexts including cancer educational sessions and support groups. Minimal/uninterested