Designing for sustainability: Co-designing and testing the efficacy of a web-based toolkit to improve cancer-related emotional distress and anxiety for rural older cancer survivors

PROJECT SUMMARY: From 2019-2022, telehealth uptake in rural health clinics surged by 73%. This rapid acceleration in telehealth uptake was driven by COVID-19 precautions, the permanent closure of rural hospitals, a massive shortage of mental health professionals, and $1.5 billion in federal investment in broadband access. However, despite the

availability and investment in telehealth, many rural patients, especially rural older adults, lack the digital literacy

necessary to fully utilize it, exacerbating barriers to quality healthcare and hindering the potential benefits of telehealth

in expanding access to quality healthcare. Increasing rurality and older age are associated with lower digital literacy and telehealth adoption, and rural older cancer survivors (ROCS) face compounded vulnerabilities, which are exacerbated by the reduced access to mental health professionals in rural areas for ROCS experiencing cancer-related distress.

Cancer-related distress is stress and anxiety related to a cancer diagnosis and treatment. Telehealth providing support for cancer-related distress is a promising strategy to expand care in rural areas with a shortage of mental health

professionals. Still, without interventions to address digital literacy, many ROCS will go without this critical care, thus compromising their overall cancer outcomes. To this end, we developed CONNECT, a web-based toolkit targeting digital literacy and mental health support for ROCS, employing a user-centered design approach and the Designing for

Dissemination and Sustainability logic model. CONNECT addresses digital literacy and supports for cancer-related

distress management through interactive activities for setting up telehealth visits, accessing educational materials about cancer-related distress, and providing individualized mental health resource recommendations. Feedback from our pilot usability study was positive, reporting high levels of acceptability and usability from users. Yet, additional comments

underscored the need to enhance the platform with opportunities to engage caregivers remotely but synchronously to

provide additional real-time digital literacy assistance. Building on this pilot, we propose to adapt CONNECT using a co- design process to include recommendations from our pilot, namely, functions that permit synchronous communication with a caregiver (Aim 1). In Aim 2, we will conduct a 2-arm randomized controlled trial to evaluate the efficacy of the

adapted CONNECT for improving cancer-related distress among ROCS. We will randomly assign ROCS-caregiver dyads (N=274) to a CONNECT intervention group (N=134) or enhanced standard of care (n=134). Dyads in the intervention group will receive usual care and engage with CONNECT. Participants in the enhanced standard of care

group will receive usual care and survivorship care and cancer-related distress literature. Our primary outcome is levels of cancer-related distress. We will secondarily assess digital literacy and healthcare engagement, clinical care, and

existing social support networks every 4 months after enrollment for 12 months. In Aim 3, we will use exit interviews in Aims 1 and 2 with a subsample of participants to examine outcomes related to implementation and potential sustainability in the rural multi-level context. Completing these aims will inform future integration of CONNECT across

multiple healthcare systems for a multi-site scaled-up effectiveness RCT.