ABSTRACT
Background/Purpose: RBST patients have limited supportive care resources and feel secluded as few healthcare providers have expertise in these diseases. The NCI-CONNECT specialized clinic for adults with RBSTs created a multidisciplinary approach with a genetic counselor, knowledgeable healthcare team, and group sessions with a health and wellness counselor (CARES). The CARES sessions created an educational and supportive space for patients to share their unique experiences. We report the adaptation of the CARES group that evolved from in-person to virtual during COVID. Method(s): Patients with RBSTs and their families attended weekly (1 h) groups at their clinic appointments. The CARES group leaders (A.A, S.S) led wellness/coping presentations (15-20 min) and a guided discussion on the topic. In 2021, the COVID pandemic shifted the group to monthly virtual meetings, and educational content was shared via a closed-Facebook group and NCI-CONNECT website. Six groups included presenters within Neuro-Oncology, shortened prerecorded presentations (10 min) allowing for more engagement opportunities, and a coping activity concluded the meeting. Emailed survey feedback was requested (5 out of 13 completed). Result(s): On average, six patients attended each group. Topics included mindfulness, distress, relational challenges, body image, and an educational series on symptom management. All presentations can be found on the NCI-CONNECT website. Patients reported enjoyment in the ability to connect with others, with 80% preferring monthly virtual meetings. Open-ended comments noted that hearing other patients' stories created connections patients expressed they needed. Conclusions and Implications: The virtual CARES group created an accessible space for RBST patients to build relationships and gain support to manage the uncertainties of coping with a rare disease during a time of physical isolation. Patient responses capture the need to continue the group further. Future work will focus on expanding the group based on patient needs and building metrics to understand the overall group benefits in a virtual world.