Engage is a comprehensive, remote-delivered telehealth program designed to educate, empower and engage childhood cancer survivors to self-manage their health after cancer. As part of Engage, we developed an extensive and complex patient reported outcome meas ure(PROM) tool called the Health and Lifestyle Assessment (HLA). The HLA is an innovative PROM solution that ensures assessment is a) tailored to the individual, using smart logic to reduce response burden, b) supports diagnostic capabilities, not just the report of known disease, c) encompasses all body systems, reflecting the broader impact of cancer therapies, and d) goes beyond medical assessment to include health behaviours, psychosocial concerns, family history, family planning, medication use, and more. The development of the Health & Lifestyle Assessment was guided by a multidisciplinary team of experts and creates a systematic framework to serve as a solution to support personalised, distance-delivered comprehensive survivorship care.
This symposium will address the following: 1) Can comprehensive PROMs be integrated in survivorship care programs to guide care in real time? 2) What is the acceptability of lengthy and complex Patient-Reported Outcomes (PROs)? 3) Do complex medical PROMs require additional nurse validation to ensure accuracy and comprehensiveness? 4) What care pathways are necessary to ensure that identified patient concerns are adequately supported? 5) Do clinicians feel they have the necessary information to provide effective care?
Initial findings suggest that the HLA is acceptable to survivors, is acceptable to nurses for integrated use within the busy clinic setting, and acceptable to clinicians involved in multidisciplinary meetings, effectively supporting the remote provision of comprehensive survivorship care. Our ongoing research seeks to refine the HLA Engage and establish it as a cornerstone of remote survivorship care, ensuring that cancer survivors receive the comprehensive care they need, regardless of geographical or logistical barriers.