NCI Rural Cancer Control

In the realm of devastating illnesses impacting rural America, there are few that exact the same physical, social, and psychological toll of lung cancer. Lung cancer is the leading cause of cancer death in rural America, and the toll is particularly acute in Kentucky, a state that not only leads the nation in lung cancer incidence and mortality but is a global epicenter of lung cancer. In addition to substantial lung cancer burden in its rural communities, Kentucky suffers tremendous socioeconomic challenges, including low wages, poor access to quality healthcare, low educational achievement, and widespread poverty. Historically, the lung cancer burden in rural Kentucky has been exacerbated by the repercussions of significant socioeconomic hardship, including limited prevention efforts, lack of early detection, constrained treatment options, and systemic challenges to the availability of high quality lung cancer care. However, individuals with lung cancer are now living longer. Despite the longstanding nihilism regarding lung cancer care, recent transformative changes in nearly every sector of lung cancer prevention and control have renewed optimism and created opportunities for long-term lung cancer survivorship. These dramatic changes in the landscape of lung cancer invigorate the need to develop, evaluate, and implement lung cancer survivorship interventions to improve quality of life, increase treatment engagement, manage symptoms, promote psychosocial wellbeing, and support health behavior change for the growing population of lung cancer survivors. Although lung cancer survivorship care-specific guidelines await development, there are notable quality care standards regarding overarching cancer care (e.g., tobacco treatment, distress screening and management, navigation and support) that remain highly relevant for increasing quality lung cancer care and outcomes in rural America. The goal of the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program is to reduce lung cancer burden via innovations in lung cancer care that overcome lung cancer stigma, help survivors engage more fully in their care, and promote clinically-meaningful improvements across a diverse set of quality of life and health behavior outcomes. Using a novel precision survivorship framework, the investigative team collaborated with community-based advocates, lung cancer care clinicians, and lung cancer survivors to develop the program based on principles of patient-centered care, shared decision making, and motivational interviewing. Fundamentally, the program seeks to facilitate engagement and support quality care within the lung cancer survivor community. A large pilot trial conducted in collaboration with nine lung cancer care facilities in Kentucky accrued over 140 lung cancer survivors and demonstrated that the intervention is highly acceptable to lung cancer survivors, caregivers, and clinicians. The pilot trial also demonstrated the feasibility of implementing the proposed study methods in diverse cancer care settings throughout the rural and Appalachian regions of Kentucky. Following the NIH Stages Model of Behavioral Intervention Development, the proposed study continues this program of research by conducting a two-group parallel randomized controlled trial among 300 lung cancer survivors and will compare the impact of the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program against an enhanced usual care condition (bibliotherapy and assessment) on lung cancer quality of life and related outcomes. Lung cancer survivors in rural areas will be recruited from ten thoracic oncology care facilities throughout Kentucky. Based on “lessons learned” and the highly encouraging results of the pilot trial, the investigative team will conduct the proposed trial with guidance from the previously established Community Advisory Board and evaluate the following three aims: Aim 1: Compare the efficacy of the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program against an enhanced usual care condition (EUC) with regard to lung cancer quality of life, treatment engagement, symptom burden, psychosocial well-being, and behavior change. Aim 2: Compare the cost-effectiveness of the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program against an EUC condition with regard to lung cancer quality of life. Aim 3: Evaluate the impact of caregivers as intervention partners on lung cancer survivors’ quality of life. Based on highly encouraging pilot data collected in thoracic oncology care programs across Kentucky, this lung cancer survivorship care intervention holds the potential to establish a new paradigm for mitigating challenges associated with lung cancer in rural and socioeconomically disadvantaged areas. Not only does this precision survivorship approach identify unique strategies to engage the hard-to-reach lung cancer survivor community, it could be a paradigm-shifting strategy that integrates survivors’ own preferences into cancer care delivery to extend reach and engagement in other historically hard-to-reach populations.