Health care improvement and survivorship priorities of colorectal cancer survivors: findings from the PORTAL colorectal cancer cohort survey

Purpose Few population-level surveys have explored patient-centered priorities for improving colorectal cancer survivors’ care. Working with patients, we designed a survey to identify care improvement and survivorship priorities. Methods We surveyed a random sample of 4000 patients from a retrospective, population-based cohort of colorectal cancer survivors diagnosed during 2010–2014. The survey included two multiple response questions: “What would you have changed about your cancer diagnosis and treatment experience?” and “What are your biggest health or lifestyle concerns (other than having cancer) since being diagnosed?” Multivariable regression identified characteristics associated with endorsement of health care experience and survivorship concerns. Results Survey response rate was 50.2% (2000/3986). Fifty-three percent reported at least one unmet need, most commonly for more information about life after treatment (26.7%). Survivors of rectal cancer reported more needs than respondents with colon cancer; persons of color reported more needs than non-Hispanic whites; individuals without high school diplomas reported more needs than individuals with more education. Fear of recurrence was the most common health/lifestyle concern (58.9%). Respondents under age 65 reported nearly all health/lifestyle concerns more often than respondents over age 74. Rectal cancer survivors reported more concerns about activity limitation, changes, and body function and appearance than colon cancer survivors. Persons of color were more likely to report financial concerns than non-Hispanic whites. Conclusions The greatest needs for intervention are among survivors of rectal cancer, survivors of minority racial/ethnic background, and survivors of younger age. Survivors with low educational attainment and those with higher stage disease could also benefit.