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RecruitingInterventional

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

NCT ID: NCT05745285Sponsor: University of MiamiLast updated: 2026-02-20

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.

Arms & 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.

Outcome measures

Primary

  • Change in number of care needs as measured by the Access to Care Survey

    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.

    Time frame: Baseline, 3 month, 6 month

  • Change in number of medication access problems as measured by the Access to Care Survey

    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.

    Time frame: Baseline, 3 month, 6 month

Secondary

  • Change in general health-related quality of life (HRQL)

    Time frame: Baseline, 3 month, 6 month

  • Change in treatment satisfaction as measured by FACIT

    Time frame: Baseline, 3 month, 6 month

  • Change in financial toxicity as measured by FACIT-COST

    Time frame: Baseline, 3 month, 6 month

Eligibility criteria

Sex: AllAge: 18 Years and olderHealthy volunteers: No
Inclusion Criteria: * 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 Criteria: * 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.

Study locations (3)

Sylvester Comprehensive Cancer Center

Miami, Florida, 33136

Recruiting
Madeline Krause, MSEd · Contact
305-243-3329mkrause@miami.edu
Frank Penedo, PhD · Principal Investigator

University of Chicago Comprehensive Cancer Center

Chicago, Illinois, 60637

Not Yet Recruiting
Mariam Nawas, MD · Contact
773-702-6149nawasm@bsd.uchicago.edu
Mariam Nawas, MD · Principal Investigator

Mays Cancer Center at UT Health San Antonio

San Antonio, Texas, 78229

Not Yet Recruiting
Patricia Chalela, DrPH · Contact
210-562-6513chalela@uthscsa.edu
Patricia Chalela, DrPH · Principal Investigator