A qualitative study of age-specific care needs in patients with early-onset advanced colorectal cancer

To investigate whether a questionnaire for Adolescent and Young Adults (AYAs), used to make an inventory of clinical care needs, can also be helpful to identify care needs of patients with early-onset colorectal cancer (eoCRC) (aged up to 50 years). To evaluate the content and usability of the questionnaire, semi-structured interviews with eoCRC patients treated with systemic therapy were conducted until data saturation was reached. Characteristics of respondents were reported. Interviews were transcribed verbatim, and analyses were performed using grounded theory. EoCRC patients perceived the questionnaire as a user-friendly tool to identify care needs. They long for more support on the themes family, support of children, interaction with family and friends and proactive care planning, depending on their phase of life and disease. Patients desire to discuss the questionnaire multiple times, because care needs change during the disease course. The questionnaire is a user-friendly tool to identify care needs of eoCRC patients. To improve care, patients emphasize that the questionnaire should be specified by phase of life and disease, include extra topics and offered several times. This study identifies unique care needs of patients with eoCRC and addresses topics to be improved in current care. • The AYA-questionnaire is a good tool to identify care needs. • Important to discuss: fertility, sexuality and support of children and family. • Proactive care planning needs attention. • The questionnaire should be discussed several times.