RecruitingNot ApplicableNCT05745285

Leukemia and Lymphoma Society (LLS) Services Impact on Outcomes and Care

The Impact of a Non-Profit Cancer Advocacy Organization on Patient Reported Outcomes and Access to Care: A Multisite, Longitudinal Trial

Sponsor

University of Miami

Enrollment

400 participants

Start Date

Feb 4, 2025

Study Type

INTERVENTIONAL

Conditions

Lymphoma Leukemia Myeloma Myelodysplastic Syndromes Myeloproliferative Neoplasm

Summary

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.

Eligibility

Min Age: 18 Years

Inclusion Criteria8

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

Exclusion Criteria8

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.

Interventions

OTHERLLS Program

The intervention will be conducted virtually. Participants will receive LLS's free patient and caregiver services including co-pay assistance, transportation and urgent need assistance, a scholarship program for young adult patients and survivors, one-on-one peer-to-peer support, online chats and support groups facilitated by clinical social workers, and nutrition counseling with a registered dietician for 6 months.