Abstract
BackgroundStudies 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.MethodsWe 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.ResultsWe 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).ConclusionsOur study provides a comprehensive assessment of health information needs among individuals with CRC across the care continuum.
Highlights
Studies evaluating health information needs in colorectal cancer (CRC) lack specificity in terms of study samples involving patients
Our objectives were to: assess how health information needs of individuals with CRC are met across the care continuum, including during and following treatment; and examine factors associated with having health information needs met
We quantified the extent that needs were met across various aspects - general information needs, CRC treatment information needs, and specific information needs according to participant treatment status
Summary
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. Earlier studies evaluating health information needs in CRC lack specificity in terms of study samples involving patients with cancer with minimal representation of those with CRC [10, 11]. As well, while these studies have reported on the types of health information individuals diagnosed with CRC sought, they did not evaluate whether these information needs were met/unmet [10, 11]. As with our prior study on health information seeking behaviours in CRC [7], to guide this work, we drew from Wilson’s Second Model of Information Behaviour [13], which suggests that attainment of information needs is the necessary final component that closes the feedback loop following motivators that drive an individual to search for information and health seeking behaviours
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