A national representative survey of the information and health care needs amongst long-term survivors of Childhood, Adolescent and Young adult cancers. A Norwegian Consortium on Late Effects after Cancer initiative.

Norwegian title: Spørreskjemaundersøkelse om behov for informasjon og helsetjenestetilbud etter behandling for kreft i ung alder

Project coordinator: Jon Håvard Loge OUS and Cecilie Kiserud OUS

Investigator: Hanne Cathrine Lie post-doc OUS

Collaborators: Ellen Ruud OUS, Arnstein Finset UiO, Sophie Fosså OUS

Synopsis: A comprehensive questionnaire survey regarding current physical and mental health, quality of life, financial implications of the cancer disease and health literacy as well as survivors’ experiences with and needs for long-term follow-up care and information about late effects. The survey consists of validated questionnaires and tailored questions regarding health care needs and information preferences based on results from focus groups among survivors and a review of the literature. The survey was mailed to all survivors of childhood cancers, breast- and colorectal cancers, non-Hodgkin’s lymphomas, leukemia and 1000 of 2800 survivors of malignant melanomas, whom were diagnosed before the age of 40 and treated between 1985-2009 (N=5900). The survivors were identified through the Cancer Registry of Norway.

Funding: The Norwegian Cancer Society and The Research Council of Norway

Project Status: Ongoing