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 1,041 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.

“Their Whole Lives Are Going To Change”: A Photo-Elicitation Study of Rectal Cancer Survivorship

“…A total of 20 patients participated in the study and submitted an average of 8 photographs (range, [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17]. Participant demographics and characteristics are detailed in Table 1.…”

Identifying unmet information needs of advanced cancer patients in Iran: An in‐depth qualitative study

“…[13][14][15][16] Over the past few decades, extensive research efforts have been made to assess the information needs of patients with lung cancer, breast cancer, colorectal cancer, and various types of cancer. [17][18][19][20] The results of these studies suggest that patients often experience more complex symptoms and issues as cancer progress than in the early stages of the disease. The information needs of patients with advanced cancer have often been reported as unmet care needs.…”

“…Increasing self‐care information in them will lead to increased participation in the treatment selection process, increase self‐care, reduce anxiety and worry, and thus improve quality of life 13–16 . Over the past few decades, extensive research efforts have been made to assess the information needs of patients with lung cancer, breast cancer, colorectal cancer, and various types of cancer 17–20 . The results of these studies suggest that patients often experience more complex symptoms and issues as cancer progress than in the early stages of the disease.…”

Addressing colon cancer patients’ needs during follow-up consultations at the outpatient clinic: a multicenter qualitative observational study

“…Overall, the patients were satisfied with the information and explanations given by their healthcare provider, but some wished for more information about coping with their disease and work-related activities. A recent crosssectional survey found similar unmet informational needs among colorectal cancer patients [29]. Other healthcare providers may have a different approach to dealing with cues and concerns, and this warrants investigation.…”