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Recruiting NCT05745285

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

No phase Interventional Leukemia Lymphoma Myeloma Myelodysplastic Syndromes

For patients and families

In plain language

An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.

What is being studied
The protocol lists: LLS Program.
Who it may be relevant to
Registry conditions: Leukemia, Lymphoma, Myeloma, Myelodysplastic Syndromes. Basic parameters: from 18 years · All.
What needs checking
Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
Where it takes place
United States
Next step
Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →

Unsure about the terms? Read our patient guide →

Official title

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

Overview

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.

Interventions

  • Other LLS 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.

Primary outcome measures

  • 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 medication access problems as measured by the Access to Care Survey [Time frame: Baseline, 3 month, 6 month]
Secondary outcome measures (3)
  • 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

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.

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: No

Study design

Allocation
Randomized
Model
Parallel assignment
Masking
Open label
Primary purpose
Supportive care

Study locations

United States · 3 centers
  • Sylvester Comprehensive Cancer Center — Miami
  • University of Chicago Comprehensive Cancer Center — Chicago
  • Mays Cancer Center at UT Health San Antonio — San Antonio

Identifiers

NCT: NCT05745285 · 20220784 · 20220220

Primary sources (government registries)

View this study on ClinicalTrials.gov ↗