The Impact of a Non-Profit Cancer Advocacy Organization on Patient Reported Outcomes and Access to Care: A Multisite, Longitudinal Trial
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 400
- 试验地点
- 3
- 主要终点
- Change in number of care needs as measured by the Access to Care Survey
研究概览
简要总结
The purpose of this study is to learn about the impact that the services and programs provided by Blood Cancer United (formerly, The Leukemia and Lymphoma Society) have among patients with blood cancer, such as access to care, quality of life, and financial burden.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Be diagnosed with, or have a recurrence of leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN).
- •Have received, be receiving, or be planning to receive primary or relapse treatment for leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN) and meet at least one of the following criteria:
- •Be currently receiving treatment which started within the past 18 months OR
- •Be planning to start treatment within one month OR
- •Have received Bone Marrow Transplant or CAR-T cell therapy within the past 100 days.
- •Not be currently participating in any LLS programs or services
- •Be willing to be followed for 6 months
- •Speak English or Spanish
排除标准
- •Are not diagnosed with, or have a recurrence of leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN)
- •Do not meet at least one of the following criteria if treated or planning to get treated for leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN):
- •Be currently receiving treatment which started within the past 18 months OR
- •Be planning to start treatment within one month OR
- •Have received Bone Marrow Transplant or CAR-T cell therapy within the past 100 days.
- •Are currently participating in any LLS programs or services
- •Are not willing to be followed for 6 months
- •Do not speak English or Spanish.
研究组 & 干预措施
LLS Program and Usual Care Group
Participants in the LLS Program and Usual Care condition will receive LLS services such as information, services, and financial aid so that patients can have better access to healthcare and better quality of life. Participants will also receive the standard care. Participants will be in this group for 6 months.
干预措施: LLS Program (Other)
Usual Care Group
Participants will receive the standard care. Participants will be in this group for 6 months.
结局指标
主要结局
Change in number of care needs as measured by the Access to Care Survey
时间窗: Baseline, 3 month, 6 month
Change in number of care needs will be assessed via the self-report Access to Care Survey which includes access to primary and specialty care, access to medications specific to cancer care, and access to financial resources specific to cancer care. The survey uses a composite score to assess participants' needs. Scores range from 0 to 21 with lower scores indicating better access to care needs.
Change in number of medication access problems as measured by the Access to Care Survey
时间窗: Baseline, 3 month, 6 month
Change in number of medication use will be assessed via the self-report Access to Care Survey which includes access to medications specific to cancer care. The survey uses a composite score to assess participants' medication use. Scores range from 0 to 6 with lower scores indicating better access to medication.
次要结局
- Change in general health-related quality of life (HRQL)(Baseline, 3 month, 6 month)
- Change in treatment satisfaction as measured by FACIT(Baseline, 3 month, 6 month)
- Change in financial toxicity as measured by FACIT-COST(Baseline, 3 month, 6 month)
研究者
Frank Penedo
Professor
University of Miami