SUNY Buffalo, Buffalo, NY
Katia Noyes , Christina Crabtree-Ide , David Holub , Michelle Shayne , Jennifer Rodriguez , Irfan Rizvi , Fergal J. Fleming , Varsha Sharda , Pradeep Sharda , Patricia Bellohusen , Nancy K. Termer , Louis S. Constine
Background: Nearly 3 million cancer survivors in the US reside in rural areas. Existing survivorship care models were developed mainly at large academic centers, and thus require adaption to meet the challenging needs of the rural community. Rural cancer survivors (RCS) face issues with coordination of care, decision-making, access to specialty services, supportive care resources, and time and resources required for travel. RCS are at greater risk for social isolation and inadequate emotional support. To address these challenges, many studies propose information technology (IT), mobile, and video solutions. We assessed the potential of online and mobile video technology applications to reduce barriers to survivorship care for RCS, families, and caregivers. Methods: We conducted 2 in-person focus groups with rural care managers, providers, and public health professionals, and one virtual cross-disciplinary focus group of patients, caregivers, and provider stakeholders to evaluate acceptability of video modules. Using a Community-Based Participatory Research approach, we worked with community partners to design and develop materials that adequately addressed their needs. Results: Focus group results indicate that video modules added little value for RCS due to sporadic internet access, limited patient IT literacy, vision and memory problems, and patient difficulty interpreting information. Therefore, we designed and piloted a paper RCS Checklist to be taken to appointments, available in waiting areas or through care managers, and to serve as a guide for shared patient-provider decision-making. The resulting checklist includes evidence-based information about survivorship care goals and approaches, care coordination strategies, information about local cancer supportive services, health insurance reimbursement, state disability policies, psychosocial support, and stress-reduction tips. Conclusions: In some special patient populations like RCS, use of health IT for patient empowerment and care coordination may be a poor choice. Engaging relevant stakeholders in the development of location-specific communication and decision aid materials is paramount to successful engagement of patients and caregivers.
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