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| ID | Type | Description | Link |
|---|---|---|---|
| 20220220 | Other Identifier | University of Miami |
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| Name | Class |
|---|---|
| Blood Cancer United | OTHER |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| LLS Program and Usual Care Group | Experimental | 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. |
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| Usual Care Group | No Intervention | Participants will receive the standard care. Participants will be in this group for 6 months. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 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. |
| Measure | Description | Time Frame |
|---|---|---|
| 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. | 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. | Baseline, 3 month, 6 month |
| Measure | Description | Time Frame |
|---|---|---|
| Change in general health-related quality of life (HRQL) | 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. | Baseline, 3 month, 6 month |
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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:
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):
Are currently participating in any LLS programs or services
Are not willing to be followed for 6 months
Do not speak English or Spanish.
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Carlos Melara, MD | Contact | 3052438300 | cam32407@med.miami.edu | |
| Sara Fleszar-Pavlovic, PhD | Contact | sarafleszarpavlovic@med.miami.edu |
| Name | Affiliation | Role |
|---|---|---|
| Frank Penedo, PhD | University of Miami | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Sylvester Comprehensive Cancer Center | Recruiting | Miami | Florida | 33136 | United States |
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| ID | Term |
|---|---|
| D007938 | Leukemia |
| D008223 | Lymphoma |
| D054219 | Neoplasms, Plasma Cell |
| D009190 | Myelodysplastic Syndromes |
| D009196 | Myeloproliferative Disorders |
| D019337 | Hematologic Neoplasms |
| ID | Term |
|---|---|
| D009370 | Neoplasms by Histologic Type |
| D009369 | Neoplasms |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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| Change in treatment satisfaction as measured by FACIT | 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. | Baseline, 3 month, 6 month |
| Change in financial toxicity as measured by FACIT-COST | 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. | Baseline, 3 month, 6 month |
| University of Chicago Comprehensive Cancer Center | Not yet recruiting | Chicago | Illinois | 60637 | United States |
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| Mays Cancer Center at UT Health San Antonio | Not yet recruiting | San Antonio | Texas | 78229 | United States |
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| D008232 | Lymphoproliferative Disorders |
| D008206 | Lymphatic Diseases |
| D007160 | Immunoproliferative Disorders |
| D007154 | Immune System Diseases |
| D001855 | Bone Marrow Diseases |
| D009371 | Neoplasms by Site |