Identifying patients with hereditary and familial colorectal cancer by using an online risk tool

In this trial we will evaluate the effectiveness of the implementation of a digital familial risk questionnaire in the detection of CRC patients with hereditary or familial CRC. This will be done using a stepped wedge design with 5 participating hospitals for a duration of 1.5 years. A comparion is made between an intervention phase (offering the online risk assessment questionnaire) and a control phase (hospital-based standard practice for the detection of CRC patients with hereditary or familial CRC, informed by the referral criteria that are being used in the intervention group). All patients with a diagnosis of CRC who have a first appointment at the CRC outpatient clinic will be included. The primary outcome is the percentage of all included patients who receive a recommendation for regular surveillance colonoscopies for himself/herself and/or relatives, provided by a clinical geneticist. Data from clinical geneticists is being used to answer this question.

Our aim is to increase the detection of patients with CRC with familial or hereditary CRC in order to give them an optimal CRC treatment as well as a suitable surveillance advice, and to enable the patient to inform family members about this risk so they can subsequently be referred for evaluation.



The primary objective of this study is to evaluate the effectiveness of the implementation of a digital familial risk questionnaire in the detection of CRC patients with familial or hereditary CRC.

Primary and secondary outcomes will be assessed every 2 months by searching for reports on clinical genetics consultation in medical files of included patients and if found, they can be used to answer to primary and secondary outcomes. In order not to miss any referral information, a check with local genetic centers will be done.



Secondary outcome measures, to be calculated in the intervention group only:

-Percentage of patients not adhering to referral advice. This outcome applies to patients who should be referred to a clinical geneticist based on the automatic referral advice. Adherence will be checked by verifying records on clinical genetics consultations. Involved nurses or gastroenterologists will contact these patients if no records on clinical genetics consultations are found six months after the visit to the CRC outpatient clinic.

-The number of changes in family history after verification of the completed questionnaire at the outpatient clinic. For each patient, a box can be ticked by a nurse or gastroenterologist indicating the number of answers that were changed (none, >5 or <5 changes).

-Reasons for not filling out the questionnaire at home or at all. For each patient that does not want to complete the questionnaire, the best fitting reason can be ticked from a list by a nurse or gastroenterologist after verifying with the patient.

-Usability of the questionnaire for health care providers and patients. At the end of the study all participating nurses and gastroenterologists will be given a short questionnaire with several questions about their opinion of the online questionnaire. A small number of patients will also be given a questionnaire with several questions about their opinion of the online questionnaire.

Intervention: offering an online risk assessment questionnaire to CRC patients, to facilitate the detection of CRC patients with hereditary or familial CRC

Control: Hospital-based standard practice for the detection of CRC patients with hereditary or familial CRC, informed by the referral criteria that are being used in the intervention group