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

Abstract

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.

Reproductive Health Experiences of Females Diagnosed with Young-Onset Colorectal Cancer: A Multi-Method Cross-Sectional Survey

“…We invited females who are 18 years or older, have received a diagnosis of yCRC (before the age of 50 years), and are able to communicate in English. To recruit participants, we used the authors’ and their affiliated institutions’ social media channels (e.g., Twitter, Facebook, and Instagram) as well as drawing from a list of individuals who had participated in previous CRC-related research conducted by our research team and indicated their consent to be notified of future studies [ 18 , 19 , 20 , 21 ]. Individuals were directed to a study website, designed using Qualtrics, an online survey platform, which included information about the objective of the study, eligibility criteria, and what participation involves.…”

Need differences by treatment phases between patients with colorectal cancer and their caregivers: A text mining analysis

“…In contrast to caregivers, patients have more support needs during the treatment process, and CRC treatment-related information needs are met within the healthcare system. 43 Caregivers may have easier access to an internet self-help support group than patients that face challenges related to hospitalization, treatment, and adverse treatment effects. 10 Furthermore, they may lack the opportunity to actively find information in internet self-help support groups.…”

‘Because Everybody is so Different’: a qualitative analysis of the lived experiences and information needs of rectal cancer survivors

“…We know from Dau and colleagues’ survey work that patients with rectal cancer often have unmet psychosocial needs, specifically in the workplace, and concerning mental health, sexual function and nutrition/diet. 9 Additionally, Kang and colleagues found patients with rectal cancer are generally disappointed in commercially available patient education materials. 31 Coupled with the knowledge from this study, we recognise the need to develop educational tools and support for patients during rectal cancer treatment and survivorship.…”

“…One international survey explored-in binary fashion-whether patients felt their information needs were met in certain domains. 9 And a scoping review found most studies of colorectal cancer needs did not include patient perspective. 10 A comprehensive picture of patients' lived Strengths and limitations of this study ► Semistructured interviews performed with rectal cancer survivors about their lived experiences regarding their cancer care.…”