DOI: 10.3886/e228229v1-193064
title: Previvors Recharge: A Resilience Program for Cancer Previvors

description: Hereditary Cancer Syndromes (HCS) account for approximately 5-10% of all diagnosed cancers. Inherited genetic mutations resulting in HCS significantly increase the likelihood of developing cancer and pose risks across generations. Previvors—individuals who test positive for HCS mutations but have not been diagnosed with cancer—carry up to an 80% lifetime cancer risk, face increased risks of developing multiple primary cancers, and often develop cancer at an early age. Previvors confront distinct challenges, such as intensive surveillance screening and testing that lead to “scanxiety,” health uncertainties, and dual roles of managing their own health while also caring for relatives who have the same mutation. Epidemiologic models estimate that 1 in 279 people carry one of the most common HCS: Lynch Syndrome. Advances in genetic testing have identified more inherited mutations and have made testing more widely accessible, increasing the number of individuals diagnosed with HCS and raising concerns about programs and services available to support previvors. Existing solutions are limited, underscoring the urgent need for effective, scalable interventions designed to promote previvors’ mental health and emotional well-being.<br><br>Employing a participatory design approach, and with the assistance of expert consultants (e.g., leaders of patient/previvor advocacy organizations, genetic counselors, etc.) and consumer advisors (i.e., previvor advisors), Pro-Change developed and evaluated the acceptability and preliminary effects of a PreCharge prototype: a 1-month text message-based, digital program with a supporting online portal to increase resilience and adaptive coping skills among previvors. PreCharge includes assessments, tailored feedback and text message communications, interactive online activities and tools, and just-in-time assistance to enhance resilience and coping, both of which are critical to previvor well-being. Text message communications, online activities, and just-in-time assistance helped users: 1) get informed; 2) navigate healthcare; 3) process difficult emotions; 4) get social support; and 5) engage in self-care. PreCharge also proactively offered tools to address “scanxiety” before medical appointments and allowed users to text trigger words to receive immediate assistance or additional support. <br>
description: Response Rates: The response rate was 97.1% for those completing the 1-month follow-up survey.<br>
description: A nationwide, multi-channel recruitment strategy was implemented from April 2024 to August 2024 to recruit 138 previvors who received up to 1 month of tailored text messages designed to increase their resilience and adaptive coping strategies and up to 1 month of access to an online portal that featured 42 activities related to 1) getting informed; 2) navigating healthcare; 3) processing difficult emotions; 4) getting social support; and 5) engaging in self-care, as well as various tools (e.g., guided breathing and mindfulness exercises). Participants also received additional messages in the days prior to and following medical appointments and could opt to receive more support or assistance via SMS by texting trigger words. <br><br>Inclusion criteria for the pilot test included: 1) able to read and speak English; 2) age 18 or older; 3) currently living in the U.S.; 4) regularly use a smartphone, the internet, or both; 5) regularly use text messaging, email, or both; 6) identify as having a hereditary cancer syndrome (HCS); 7) have never been diagnosed with cancer; and 8) have a “low” level of resilience as indicated by a score of 26 or below on the Connor Davidson Resilience Scale (CD-RISC 10). <br><br>456 individuals were screened for the pilot test. Of those screened, 318 screened out, leaving a total of 138 previvors to participate in the 30-day pilot of the PreCharge prototype. 134 participants completed the 1-month follow-up assessment, representing an impressive retention rate of 97.1% of the original cohort<br>
description: men and women, 18 years or older in United States<br>.
description: other; web-based survey; <b>Study design:</b><br>The PreCharge prototype is a digital program designed to support previvors by delivering both synchronous and asynchronous communications through various channels. The prototype provided a comprehensive experience that includes assessments, tailored feedback and text message communications, online access to interactive activities and tools, and just-in-time assistance. <br><br>The pilot test participants included 138 HCS previvors, recruited over the course of four months with the help of our recruitment collaborators. Individuals interested in participating in the study were provided a link to an online landing page with more information about the study, contact information for the project team, and instructions on how to register. <br><br>To register and determine eligibility for the study, interested individuals texted a trigger word (PreCharge) to the program phone number to initiate a screening assessment via text message. Individuals who screened in and consented to study participation continued to an online baseline research assessment. Following completion of the baseline research assessment, participants completed their first session, which asked them a series of questions to determine their level of resilience. Based on responses during this first session, the system delivered tailored feedback and queued 30 days worth of daily, tailored text messages focused on resilience. Completing this first session marked the end of the onboarding experience and allowed participants to proceed to their online portal, which features interactive activities and tools designed to address their resilience and coping, as well as links to additional resources. Participants were able to access their online portal at any time during the 30-day pilot period.<br><br>Four days after completing the onboarding experience, which included the first session, participants were prompted to complete a second session via text message. This session asked participants a series of questions related to an adaptive coping strategy: acceptance. Based on responses during that session, the system delivered tailored feedback and queued daily, tailored text messages about acceptance. This pattern continued for the remainder of the 30-day pilot period: every four days, participants were prompted to complete a new session via text message, during which they would be asked a series of questions related to either resilience or an adaptive coping strategy; based on their responses during a given session, the system delivered tailored feedback and queued daily, tailored text messages related to the construct assessed. Over the course of the 30-day pilot period, participants could complete up to seven sessions via SMS. The constructs assessed during each session are as follows: 1) resilience; 2) adaptive coping strategy: acceptance; 3) resilience; 4) adaptive coping strategy: active coping; 5) resilience; 6) adaptive coping strategy: venting; and 7) resilience. <br><br>All daily text messages provided tailored guidance matched to each participant’s responses to questions about their resilience and use of adaptive coping strategies, and encouraged users to engage with online portal activities and tools. <br><br>In addition to daily text messages and access to a supporting online portal, during the 30-day pilot period, participants could access “just-in-time assistance” by indicating an upcoming medical appointment or texting trigger words. Appointment-related communications were sent via SMS three days before, on the day of, and three days after an appointment to address “scanxiety” and other concerns in a timely manner. Participants could also text trigger words at any time to receive immediate assistance or additional support. Participants could choose from four trigger words, which would prompt the system to send timely guidance for improving moods, practicing gratitude, managing stress through breathing exercises, or accessing the online portal quickly.<br>