Registry Trial and Needs Assessment of Patients With Young-onset Lung Cancer: Impact of a Dedicated Care Program on Patient Experience and Outcomes
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 75
- 试验地点
- 1
- 主要终点
- Participant satisfaction with care
研究概览
简要总结
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.
详细描述
Primary Objectives:
- To determine whether enrollment in a dedicated program (YOLC) results in improved patient satisfaction with care provided.
- 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.
- 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:
- To determine whether enrollment in a dedicated program (YOLC) results in improved patient satisfaction with care provided.
- 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.
- To evaluate the impact of participation in peer support networks and whether it has a beneficial effect on the primary and secondary endpoints.
- Overall survival, defined by time from diagnosis to death from any cause
- Clinical trial enrollment, defined by participation in any therapeutic clinical trial related to lung cancer treatment after diagnosis
- 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
- Quality of life, as defined by FACT-LUNG
- 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
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 50 Years（Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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)
排除标准
- •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
研究组 & 干预措施
Assessment of Patients with Young-Onset Lung Cancer
This is a registry trial enrolling participants with NSCLC diagnosed and histologically confirmed prior to the age of 50 years identified. Each participant will participate in an intake survey as well as periodic recurring surveys to provide feedback to the YOLC Program, to elucidate the individual participant's care needs, and to assess changes in personal goals, wellness, financial impact, and family support over time
干预措施: Survey (Other)
结局指标
主要结局
Participant satisfaction with care
时间窗: Through study completion; an average of 5 year
Assessed via validated survey instruments (e.g., FACT-L, COST-FACIT). • Focus on detecting even small changes in survey responses over time (baseline, 3, 6, 9, 12 months, etc.).
次要结局
未报告次要终点