Registry Trial and Needs Assessment of Patients With Young-onset Lung Cancer: Impact of a Dedicated Care Program on Patient Experience and Outcomes

Registry Trial and Needs Assessment of Patients With Young-onset Lung Cancer: Impact of a Dedicated Care Program on Patient Experience and Outcomes

The goal of this research study is to learn about:

The effect of enrolling in the YOLC program on patient satisfaction with care provided,

The needs of patients younger than 50 with lung cancer and their family, and

The impact of participating in peer support networks on these patients.

Primary Objectives:

1. To determine whether enrollment in a dedicated program (YOLC) results in improved patient satisfaction with care provided.
2. To characterize the distinct needs of patients under age 50 diagnosed with lung cancer as well as those of their families, and how these needs may change over time throughout the care pathway.
3. To evaluate the impact of participation in peer support networks and whether it has a beneficial effect on the primary and secondary endpoints.

Secondary Objectives:

1. To determine whether enrollment in a dedicated program (YOLC) results in improved patient satisfaction with care provided.
2. To characterize the distinct needs of patients under age 50 diagnosed with lung cancer as well as those of their families, and how these needs may change over time throughout the care pathway.
3. To evaluate the impact of participation in peer support networks and whether it has a beneficial effect on the primary and secondary endpoints.
4. Overall survival, defined by time from diagnosis to death from any cause
5. Clinical trial enrollment, defined by participation in any therapeutic clinical trial related to lung cancer treatment after diagnosis
6. Completion of multi-disciplinary consultations, defined by patients completing consultations with at least one other specialist other than a thoracic medical oncologist or thoracic surgeon from time of initial consultation for the YOLC Program
7. Quality of life, as defined by FACT-LUNG
8. Financial toxicity, as defined by patient-reported financial burden, including out-of-pocket costs, insurance coverage issues, and impact of overall financial well-being (measured using validated financial toxicity scale such as COST-FACIT

Inclusion Criteria:

• Age greater than 18 years and under 50 years
• Histologic confirmation of NSCLC
• Able to complete an English-language survey independently or with the assistance of a native-language interpreter
• Pregnant women- may be enrolled due to age range of subjects. (Low risk)

Exclusion Criteria:

• Medical, psychiatric, cognitive, or other conditions that compromise the patient's ability to understand the patient information, to give informed consent, to comply with the study protocol or to complete the study.

• The following special patient population will be excluded from study group:

  • Individuals who are not yet adults (infants, children, teenagers)
  • Prisoners
  • Cognitively-impaired adults