Dataset Information

Tailoring information to older colorectal cancer patients: Effects of using a web-based patient-directed tool

ABSTRACT: Interventions: Patients will be assigned to an experimental condition that receives the Patient Navigator in addition to usual care or to a control condition that receives usual care. Randomization takes place at hospital level, i.e. three hospitals will implement the Patient Navigator and three hospitals will serve as control condition hospitals and will implement the Patient Navigator after the study has finished. The Patient Navigator is a website for older colorectal cancer patients that is systematically developed in the first part of the OCA-2 study. The Patient Navigator offers tailored information about diagnostic tests, treatments and follow-up facilities (i.e., only content that is relevant for the specific patient is showed). Moreover, the Patient Navigator offers the possibility to upload audiotaped consultations and contains tools to help patients preparing for consultations (so called Question Prompt Lists; one with general questions that people can ask about every treatment, and 13 about specific tests or treatments). Primary outcome(s): Recall of information Study Design: Non-randomized controlled trial, Single blinded (masking used), Active, Parallel

DISEASE(S): Cancer, Older Patients, Ageing, Ehealth, Patient-provider Interaction, Communication.kanker, Ouderen, Patient-zorgverlener Interactie, Communicatie

PROVIDER: 20116 | ecrin-mdr-crc |

REPOSITORIES: ECRIN MDR

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Project description:We will investigate the clinical implementation of genome sequencing (GS) for carrier screening to aid reproductive decision-making in adults. The study is organized into three inter-related Projects. The study population will include women and their partners who receive pre-conception testing. In Project 1, we will conduct a Randomized Clinical Trial to test clinical implementation of WGS compared with usual care. We will integrate WGS results with the electronic medical record (EMR), and measure outcomes from patient and physician perspectives. In Project 2, we will perform whole genome sequencing, including validation and interpretation of the identified variants to identify "actionable variants", meaning variants deemed worthy of reporting. This will include a robust approach using a Return of Results Committee (RORC) for determination of reportable results. In Project 3, we will evaluate the ethical and psychosocial implications of expanded carrier screening using WGS for the return of carrier status and secondary findings, and measure the impact on downstream healthcare utilization and cost. Two groups of women are identified through the electronic medical record. The first group has a clinical carrier screening test, usually Cystic Fibrosis (CF), ordered and completed as part of a preconception planning visit. The second group has a carrier screening test, usually CF, performed during pregnancy, they have delivered their baby and are planning a future pregnancy. Eligible women are randomized to either usual care or genome sequencing (GS). Women randomized into the usual care arm have already received their clinical genetic test. These women will not receive genome sequencing. Women in the GS arm will receive their carrier status results for about 700 gene/condition pairs approximately three months after randomization. If there are results to return, women come in for a genetic counseling session. If there are no results, a letter is sent in the mail. Incidental findings (IF) are returned about one month later. As with the carrier status results, all IF are returned in person, and if there are no results a letter is sent in the mail. If a participant is found to be a carrier of an autosomal recessive condition, her male partner is then eligible and invited to participate in the study and receive GS.

Dataset Information

Tailoring information to older colorectal cancer patients: Effects of using a web-based patient-directed tool

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