Assessing how health information needs of individuals with colorectal cancer are met across the care continuum: an international cross-sectional survey.

BACKGROUND: Studies evaluating health information needs in colorectal cancer (CRC) lack specificity in terms of study samples involving patients. We assessed how health information needs of individuals with CRC are met across the care continuum. METHODS: We administered an international, online based survey. Participants were eligible for the study if they: 1) were 18 years of age or older; 2) received a diagnosis of CRC; and 3) were able to complete the online health survey in English, French, Spanish, or Mandarin. We grouped participants according to treatment status. The survey comprised sections: 1) demographic and cancer characteristics; 2) health information needs; and 3) health status and quality of life. We used multivariable regression models to identify factors associated with having health information needs met and evaluated impacts on health-related outcomes. RESULTS: We analyzed survey responses from 1041 participants including 258 who were currently undergoing treatment and 783 who had completed treatment. Findings suggest that information needs regarding CRC treatments were largely met. However, we found unmet information needs regarding psychosocial impacts of CRC. This includes work/employment, mental health, sexual activity, and nutrition and diet. We did not identify significant predictors of having met health information needs, however, among participants undergoing treatment, those with colon cancer were more likely to have met health information needs regarding their treatments as compared to those with rectal cancer (0.125, 95% CI, 0.00 to 0.25, p-value = 0.051). CONCLUSIONS: Our study provides a comprehensive assessment of health information needs among individuals with CRC across the care continuum.

Trends in the epidemiology of young-onset colorectal cancer: a worldwide systematic review.

BACKGROUND: Recent data suggest that the risk of young-onset colorectal cancer (yCRC), in adults less than 50 years of age, is increasing. To confirm findings and identify contemporary trends worldwide, we conducted a systematic review of studies examining population-level trends in yCRC epidemiology. METHODS: We searched MEDLINE (1946-2018), EMBASE (1974-2018), CINAHL (1982-2018), and Cochrane Database of Systematic Reviews (2005-2018) for studies that used an epidemiologic design, assessed trends in yCRC incidence or prevalence, and published in English. Extracted information included country, age cut-off for yCRC, and reported trends in incidence or prevalence (e.g. annual percent change [APC]). We pooled similarly reported trend estimates using random effects models. RESULTS: Our search yielded 8695 articles and after applying our inclusion criteria, we identified 40 studies from 12 countries across five continents. One study assessed yCRC prevalence trends reporting an APCp of + 2.6 and + 1.8 among 20-39 and 40-49 year olds, respectively. 39 studies assessed trends in yCRC incidence but with substantial variability in reporting. Meta-analysis of the most commonly reported trend estimate yielded a pooled overall APCi of + 1.33 (95% CI, 0.97 to 1.68; p < 0.0001) that is largely driven by findings from North America and Australia. Also contributing to these trends is the increasing risk of rectal cancer as among 14 studies assessing cancer site, nine showed an increased risk of rectal cancer in adults less than 50 years with APCi up to + 4.03 (p < 0.001). CONCLUSIONS: Our systematic review highlights increasing yCRC risk in North America and Australia driven by rising rectal cancers in younger adults over the past two decades.

Health information seeking behaviors among individuals with young-onset and average-onset colorectal cancer: an international cross-sectional survey.

PURPOSE: Our objective was to evaluate health information seeking behaviors in yCRC (young onset colorectal cancer, diagnosed ≤ 50 years) and aCRC (average-age onset colorectal cancer, diagnosed ≥ 50 years). METHODS: We administered an international, Internet-based survey to ask individuals diagnosed with CRC how they seek health information, including sources sought and utilization behaviors. We also asked participants their preferences for digital technologies. RESULTS: In total 1125 individuals including 455 with yCRC (68.6% female) and 670 with aCRC (53.5% female) participated. There were similar frequencies of seeking among participants with yCRC and aCRC across all sources except for the Internet. Healthcare providers were the most frequently sought source with similar proportions of participants indicating their response as "always" (yCRC, 43.7% vs. aCRC, 43.2%, p = 0.91). We also observed differences in utilization behaviors with more participants with yCRC using the Internet first when seeking information (yCRC 31.6% vs. aCRC 24.3%, p < 0.05) and those with aCRC seeking healthcare providers first (aCRC 61.9% vs. yCRC 45.5%, p < 0.05). With respect to digital technologies, we found a higher proportion of yCRC participants owning smartphones and indicating use of apps related to health/wellness and cancer. CONCLUSION: Individuals with yCRC and aCRC similarly sought the same resources for health information on CRC. However, they differed with respect to utilization behaviors, particularly a greater reliance on digital technologies among individuals with yCRC. These have implications for informing age-specific resources and information to support patients.