Understanding the epidemiology of young-onset colorectal cancer and information needs of patients and survivors

Introduction: Recent evidence suggests that the risk of young-onset colorectal cancer (yCRC) is significantly increasing. Furthermore, the information needs of this population are not well understood. Unmet information needs are associated with ineffective disease self-management and negative health outcomes. Therefore, it is pertinent to understand the changing epidemiology of yCRC and the information needs of this population. Objectives: This thesis aims 1) to systematically review the literature on the incidence and prevalence trends of yCRC; 2) to determine the information-seeking behaviours of individuals with yCRC; and 3) to determine the information needs of individuals with yCRC. Methods: To address Objective 1, a systematic review was conducted. Databases were searched for studies that: used an epidemiologic design, assessed trends in yCRC incidence or prevalence, and published in English. To address Objective 2, descriptive statistics and proportions of information-seeking behaviours were reported. Lastly, Objective 3 was addressed by reporting proportions of information items unmet. Predictors of corresponding unmet information needs were assessed using multivariable logistic regression models. Results: 1) The search returned 8,695 articles with 40 studies from 12 countries across five continents. Thirty-nine studies assessed trends in yCRC incidence and only one study prevalence trends. Noteworthy, 17 studies from North America and Oceania consistently reported increasing incidence trends in yCRC. Among studies assessing cancer site, nine (of 14) showed an increased risk of rectal cancer in adults less than 50 years. 2) A sample of 366 yCRC respondents, predominantly consisting of highly-educated white women, was analyzed. At respondents’ most recent search of yCRC information (N= 323), 143 respondents relied on the Internet. 3) Among 39 information need items, 26 unmet information needs were found. Conclusion: This thesis provided evidence that risk of yCRC is increasing predominantly in North America and Oceania, driven by rising rectal cancers in younger adults over the past two decades. In addition, this thesis reports that the information needs of the recruited sample were substantially unmet.Pharmaceutical Sciences, Faculty ofGraduat