br Every months approximately patients were randomly selecte
Every 3 months, approximately 415 patients were randomly selected by a hospital representative from the hospital mailing list. They had to have received cancer treatment within the last 6 months with treatment defined as either surgery, Echinomycin therapy and/or chemotherapy (oral, intravenous or both). The hospital list filtered out all patient records based on the study’s exclusion criteria (i.e. being less than 18 years old, death during hospital stay, only receiving inpatient services, or ambulatory treatment that occurred more than 6 months prior, as well as patients with missing mailing addresses). Potential participants were also excluded if they notified the hospital that they did not wish to be included in the survey’s mailing list.
A follow-up letter and the survey questionnaire were sent again, approximately 4 weeks later, if no prior survey was received. Consistent with Quebec’s privacy laws, only designated hospital staff had access to patients’ names and addresses with no personally identifiable information collected on the survey.
All analyses were conducted using SPSS version 23 . Descriptive statistics including chi-square tests were conducted for sociodemographic data. Bivariate correlations and chi-square tests also were used to test for potential differences across cancer centers and cancer information-seeking preferences. AOPSS items of interest were selected a priori and significant omnibus chi-square tests were conducted to test for potential information-seeking group differences on 16 dichotomous AOPSS items, followed by a post-hoc procedure comparing the adjusted standardized residuals across cells. One-way ANOVAs, with a post hoc Bonferroni correction for multiple comparisons, were run for items with what could be construed as continuous scoring.
3.1. Sample characteristics
cancer diagnosis with the most common cancers being breast (31.2%) followed by colorectal/bowel (13.4%), lung (8.9%) and lymphoma (8.6%). None of the participating hospitals had signifi-cantly more respondentsofone sex or agegroup and educationlevels were normally distributed. The majority of participants reported completing the survey on their own (82.5%) with those ages 75+ more likely to report using assistance (36.4%).
3.2. Patient Cancer Information-Seeking Preferences (CISP)
Fig. 1 depicts percentage breakdowns according to each CISP with a total of 60.3% reporting being active cancer information seekers (i.e., intense, complementary, and fortuitous) and a total of 39.7% being non-seekers (i.e., guarded and avoiders). More specifically, 50.1% self-identified as complementary seekers (“I seek cancer information that adds to what I already know”), 3.8% as intense seekers, and 6.4% as fortuitous seekers ("I seek cancer information from others diagnosed with cancer”). 39.7% were not actively seeking cancer information with minimal/uninterested seekers (25.2%; “I do not seek much cancer information on my own”) and guarded/active avoiders (14.5%; "Cancer is stressful enough; I do not seek cancer information").
3.3. Sociodemographic associations with CISP
Table 1 provides CISP by sociodemographic factors. CISP were significantly associated with sex, χ2 (4, N = 2108) = 12.00, p = 0.02, with males being more likely to be minimal/uninterested seekers or guarded/active avoiders than females. There was a non-significant trend with men being slightly more likely to seek information from others diagnosed with cancer than women (Fortuitous Seekers; 6.5% vs 5.9%). A significant association was found between CISP and age, χ2 (12, N = 2117) = 36.99, p < 0.001, with older participants (75+) reporting more avoidance (47.7%). More specifically in this group, 17.6% were guarded/active avoiders and 30.1% were minimal/ uninterested. There was also a significant relationship between reporting being more active in their information searches and higher education, χ2 (20, N = 2071) = 125.13, p < 0.001 (Table 1).
Twenty AOPSS items were selected a priori because of their theoretical value in potentially being significantly associated with CISP (Table 2 for details). Significant omnibus chi-square tests were conducted to test for potential information-seeking group differ-ences on the dichotomous AOPSS items, followed by a post-hoc procedure comparing the adjusted standardized residuals across cells. Being an Intense seeker was related to being significantly less
Interestingly, all CISP groups were most dissatisfied with the lack of support received on possible changes in their relationship with a spouse or partner, with intense seekers being the most dissatisfied, χ2 as (4, N = 1328) = 34.36, p < 0.001. Four of the five CISP groups gave highest agreement ratings when asked if cephalization knew whom they could talk with when they had questions or concerns (98%, 100%, 100%, and 100% endorsements). However, for intense seekers - only 57% reported knowing who to talk to for unmet needs.