The Quality of Survival (QoS): A concept framework to assist communication and decision making about cancer care.
Fallowfield, L; Nadler, E; Greaney, M; Gater, A; Subar, M; Orsini, LS; Lyman, GH
Published in: Journal of Clinical Oncology
78 Background: The past decade has seen the development of transitional, novel cancer therapies that lengthen survival, yet data regarding the quality of that survival are limited or unavailable. Improving patient (pt)/healthcare professional (HCP) communication about issues such as QoS might enhance engagement and inform decision-making about future care. For example, the PROACT study (ECC 2015, abs.1715) has shown how little attention is given to family caregiver impact. Our objective is to develop an inclusive framework that will go beyond existing pt-reported outcomes and quality of life (QoL) constructs, and which HCPs may use to communicate with pts. Methods: An electronic database search to investigate the QoS landscape in cancer was conducted and results were articulated into a visual concept map. Subsequently, 20 US pts with metastatic NSCLC were interviewed about their cancer experiences (a similar melanoma pt survey is ongoing) and this input was integrated into the concept map. Areas explored include: symptoms, disease/treatment communication and education, pt expectations about treatment goals and involvement in decision-making, and impacts of all these on pts, families, and friends. Results: In their interviews, pts reported a host of impacts: physical, psychological/emotional, social/relationship, work, and financial. A QoS concept framework was developed to capture the holistic pt experience throughout the continuum of cancer care (during and post treatment) and consisted of 4 interconnected domains: QoL, survival, side effects and economic impact. The severity and persistence of some of the impacts ultimately affect survival, while others affect the ability to preserve or return to normality. Conclusions: While pt experiences are usually discussed and monitored by HCPs, issues identified as most important to pts and families and their variability over time, are rarely assessed formally during survival. These findings support the development of a pt-centric concept map that defines QoS, provides a comprehensive framework for improving communication between pts and their care teams about long-term QoS in cancer, and potentially enables better treatment decisions.
