Previvors Recharge: A Resilience Program for Cancer Previvors

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>