Survivorship

Social circumstances in which we are born and live are some of the most important factors influencing our health. For people with cancer, these social circumstances (social determinants of health) drive differences in access to cancer screening and diagnostic tests, stage at diagnosis, and the types of treatments they are offered and receive. The treatment options for people living with lung cancer have changed drastically over the last decade with the addition of immunotherapies and targeted drugs. However, these treatments are not accessible to all. The high costs of cancer treatments and time lost from work make people with cancer more vulnerable to financial hardship, that could affect their ability to receive cancer treatments. In this study, we hope to understand how social needs (e.g., food access, ability to pay bills, access to transportation, housing stability, social isolation, and loneliness) relate to the use of healthcare, quality of care patients with lung cancer receive, and quality of life during their treatment. To do this, we will survey 150 patients with unresectable lung cancer within one month of start of systemic treatment and at 3 and 6-months during their treatment. We will measure how social needs change over time and relate to the use of healthcare for acute problems (i.e., emergency room visits, admissions to the hospital, and urgent care visits), quality of life, and quality of care received. To obtain an in-depth understanding of how social needs can affect patient care, we will interview 30 oncology providers. Providers will be asked if and how they consider the social needs of their patients when making treatment and clinical decisions. This study will give us essential information on how to better support patients with lung cancer who face social needs that impact their daily lives and cancer care.

The number of lung cancer cases in young patients (<50 years of age) is increasing across the globe, from Asia to the United States. Young patients with lung cancer are more likely to be women, of Hispanic or Asian descent and be diagnosed with metastatic disease. In this patient population, a lung cancer diagnosis is not age normative and is profoundly disruptive. Young patients often receive more aggressive treatments and face long-term side effects. While we have seen substantial progress in mental health research in recent years, little is known about the psychological needs of young patients with lung cancer, including how they compare to those of older patients, the financial toxicity associated with their cancer treatments, and how their experiences with the healthcare system impact their wellbeing. Most survivorship studies in lung cancer have included small numbers of young patients with lung cancer, with many of these studies preceding newer cancer treatments like targeted therapy and immunotherapy.

We proposed a mixed-method study that will be designed in conjunction with an experienced research team and lung cancer patient advocates. The study will be divided into two phases 1) we plan to administer a survey that explores the psychosocial needs and the financial impact of cancer treatments to a group of young and old patients with lung cancer; this survey could be completed online, in person, or over the phone with trained personnel 2) following the survey completion, information from the survey will be used to create a guide for focus group discussions; we will conduct four focus groups with young patients with lung cancer to expand on the knowledge obtained from the survey. Focus groups are a powerful way to gain a comprehensive understanding of patient experiences by interacting on a personal, exploratory level to hear patient voices and understand their needs. We will also investigate the differences in these needs by gender and race/ethnicity in our two groups. The study results will be shared with the lung cancer patient community via a series of webinars.

The knowledge obtained from this study will be used to create the first clinical program dedicated to young patients with lung cancer in the nation and the creation of an international consortium that will focus on understanding why the number of lung cancer cases is increasing in patients <50 years of age. Most importantly, we will use the information to create interventions to improve this vulnerable population's clinical care and psychosocial support. Our study will be the first of its kind to critically evaluate the psychosocial needs of young patients with lung cancer in a diverse patient population with a secondary focus on their experiences with the healthcare system and the financial impact of a cancer diagnosis and treatments.