Patient reported outcomes after treatment for colorectal cancer – A prospective nationwide study from The Norwegian Colorectal Cancer Registry

Background and purpose

Colorectal cancer is the second most common cancer in Norway, affecting both sexes. In 2019, nearly 4 300 men and women were diagnosed with colorectal cancer (CRC).

The prognosis of CRC has improved considerably during the last 25 years, and at the end of 2019 more than 36 000 persons were alive after being diagnosed with this cancer disease in Norway.

About half of the patients are cured after treatment. The other half either have an incurable disease already at diagnosis, or will later develop an incurable spread or have a relapse.

All patients with CRC receive some form of treatment, either surgery and / or radiation therapy, chemotherapy or palliative care. Although these treatments improve survival or quality of life, patients may experience major late effects.

Therefore there is an urgent need to better understand these negative health effects in the short- and long-term in order to obtain the best possible quality of life after treatment of CRC, for shared decision making of the individual patient and for future decision making on the policy level

Study design

All women and men who have been diagnosed with bowel cancer after 1 January 2019, as well as a control group without CRC, are invited to participate in the survey.

The survey consists of a set of questionnaires. Those who have had CRC will receive the questionnaire approximately one year after diagnosis.

The information from the questionnaire is stored in a safe area in the Cancer Registry's approved technical solution, and is compiled with relevant health information that may be registered about you in the Cancer Registry and other statutory health registries such as the Norwegian Patient Register and Prescription Register etc. and information from socioeconomic data in Statistics Norway.

The study is based on The National Quality Register for Colorectal Cancer, which is administered by the Norwegian Cancer Registry.

Findings

The project will collect data from patients and controls until the end of 2021. The first results from the project will be presented during 2022.