癌症倾向的护理计划

实验性的：Intervention: Digital Care Plans with Accompanying Text Messages

Investigators will recruit families and patients diagnosed with a Cancer Predisposition Syndrome within 5 years. Participants will be provided with a digital care plan and optional accompanying text message reminders.

其他：Digital Care Plans

Investigators will develop digital care plans for 10 common Cancer Predisposition Syndromes for patients diagnosed within 5 years.

Change in Knowledge Score

The primary outcome is the percentage of correct items on a knowledge survey that was developed for this study and administered via REDCap, measured at baseline (2 weeks prior to receiving the Care Plan/text message intervention), midpoint (3 months post receiving the Care Plan/text message intervention), and final (6 months post receiving the Care Plan/text message intervention) surveys. The change in the mean and standard deviation will be assessed at 3 months and 6 months. Participants evaluated included the caregivers and AYAs aged 12-26. Total scores were generated by summarizing total number of correct responses and generating a percentage. The knowledge measure included a mix of 10-12 multiple choice and true/false questions, CPS dependent. Higher scores indicate higher CPS knowledge and Care Plan content.

Acceptability of Use of Digital Care Plans for CPS

Acceptability: a 3-question acceptability measure created for this project, scored on a Likert scale from 1=Not at All to 5=Completely. Higher total scores indicate greater acceptability on ease of understanding the Care Plan, new information gained from the Care Plan, and its general usefulness. Scores range from 0-15, with higher scores indicating greater acceptability of the Care Plan.

Feasibility of Use of Digital Care Plans for CPS for Patients Diagnosed Within 5 Years

Feasibility will be assessed with absence of mean number of technical difficulties of Care Plan Creation by the Clinical Research Coordinator (CRC) in under 15 minutes in a busy clinical setting. The CRC made note of any technical difficulties at creation of Care Plan via REDCap.

Satisfaction With Decision (SDS) to Have Germline Testing

Satisfaction with decision to have germline testing will be measured by participants' completion of electronic questionnaires administered via REDCap. Satisfaction with Decision Scale (SDS): a 6-question decision satisfaction measure, scored on a Likert scale from 1= Strongly Disagree to 5= Strongly Agree. Higher total scores indicate greater satisfaction with decisions for pursuing genetic testing. Scores range from 0-30, with higher scores indicating greater satisfaction.

Change in Cancer-Related Anxiety

This 15-item measure assesses cancer-related anxiety through two subscales (intrusive thinking and avoidance). Responses are measured on a 4-point Likert scale with the following anchors: 0 "not at all", 1 "rarely", 3 "sometimes", and 5 "often". Scores range from 0 to 35 for intrusion, 0 to 40 for avoidance, and 0 to 75 for the total IES. Higher scores indicate greater cancer-related anxiety. Cancer-related anxiety will be measured by participants' completion of electronic questionnaires administered via REDCap.