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NCT Number: NCT05745285

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

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.

Recruiting

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Key information

Conditions

Leukemia Bone Marrow Diseases Hematologic Diseases Hematologic Neoplasms Hemic and Lymphatic Diseases Immune System Diseases Immunoproliferative Disorders Lymphatic Diseases Lymphoma Lymphoproliferative Disorders Myelodysplastic Syndromes Myeloma Myeloproliferative Disorders Myeloproliferative Neoplasm Neoplasms Neoplasms by Histologic Type Neoplasms by Site Neoplasms, Plasma Cell

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Sylvester Comprehensive Cancer Center, Miami, Florida, United States

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Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

LLS Program

Other

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.

Primary outcomes

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

    Time frame: 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.

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

    Time frame: 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.

Secondary outcomes

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

    Time frame: Baseline, 3 month, 6 month

    The Functional Assessment of Cancer Therapy-General (FACTG) 5 will be administered to evaluate general domains of HRQL. Quality of life is scored on a scale with scores ranging from 0 to 108, with higher scores indicating better health-related quality of life outcomes.

  2. Change in treatment satisfaction as measured by FACIT

    Time frame: Baseline, 3 month, 6 month

    The 8-item Functional Assessment of Chronic Illness Therapy (FACIT) Treatment Satisfaction - General (TS-G) is a Likert scale designed to assess satisfaction with general medical treatments. A summary score yields a treatment satisfaction composite with higher scores indicating greater treatment satisfaction.

  3. Change in financial toxicity as measured by FACIT-COST

    Time frame: Baseline, 3 month, 6 month

    The 12-item Functional Assessment of Chronic Illness Therapy - Comprehensive Score for Financial Toxicity (FACIT-COST) is a patient reported outcome measure that describes the financial distress experienced by cancer patients. Score range 0-44 with higher scores indicating better Financial Well-Being.

Study contacts

Contact information is provided by the study sponsor or research team.

Carlos Melara, MD

CONTACT

[email protected]

3052438300

Sara Fleszar-Pavlovic, PhD

CONTACT

[email protected]

Sponsors and collaborators

Lead sponsor

University of Miami

Other

Collaborators

  • Blood Cancer United

Registry information

Official study title

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

Important dates

Study start
2025
Primary completion
2026
Study completion
2026
First posted
Feb 27, 2023
Registry last updated
Feb 20, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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