PATIENTS PERSPECTIVES ON TREATMENT DECISION-MAKING AND THE ACCEPTABILITY AND USABILITY OF THE INTERACTIVE WEB-ENABLED COMMUNICATION RESOURCES OF THE CLL/SLL CARE ROAD MAP
Study on Decision-Making and Usability of Resources for Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL) Patients
Larry Cripe, MD
Primary Investigator
Brief description of study
The purpose of the study is to understand how you think about choosing between two or more treatment options and then to seek your reactions to the CLL Mind Map and Patient First Resources.
Study participants will engage in a virtual interview, watch demonstrations, and complete brief surveys. This session should last no more than 60 minutes.
Your decision to participate or not in this study is voluntary and will in no way affect your medical care or relationships with the physicians or staff of the cancer center.
Detailed description of study
People who agree to participate in the study will be asked to do the following:
• Participate in an interview during which you will be asked to recall an experience choosing between two or more treatment options (including the option of no treatment) and then discuss factors that affected your choice.
• Watch a demonstration of the CLL Mind Map and answer questions about its design and functionality.
• Use the CLL Mind Map and then answer questions about its design and functionality.
• Review Patient First information about the harms and benefits of CLL treatment options and then answer questions about the design and functionality
• Complete a brief survey in which we ask demographic questions (age, race, marital status, etc), questions related to how you think about medical decisions, and your experience with the CLL Mind Map.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Chronic Lymphocytic Leukemia, CLL, Cancer
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Age: 18 years - 100 years
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Gender: All
Inclusion Criteria
Treated Patients
1. Documented diagnosis of CLL/SLL or indolent NHL with a clonal lymphocytosis, e.g., B-cell NOS or splenic marginal lymphoma
2. Currently receiving or have received treatment for CLL/SLL
3. Age greater than 18 years
4. Access to a computer with stable internet connections if a virtual interview is requested.
5. Able to read and speak English.
6. Willing to participate in study procedures.
7. Able to provide verbal informed consent.
Untreated Patients
1. Documented diagnosis CLL/SLL or indolent NHL with a clonal lymphocytosis, e.g., B-cell NOS or splenic marginal lymphoma.
2. No history of treatment for CLL/SLL
3. Age greater than 18 years
4. Access to a computer with stable internet connections if a virtual interview is requested.
5. Able to read and speak English.
6. Willing to participate in study procedures.
7. Able to provide verbal informed consent.
This study investigates how patients with CLL/SLL make decisions about their treatment options. CLL stands for chronic lymphocytic leukemia, and SLL stands for small lymphocytic lymphoma, both of which are types of blood cancers. The study aims to understand patient perspectives on choosing between different treatments and to gather feedback on the CLL Mind Map and Patient First Resources.
Participants will take part in a virtual interview, watch demonstrations, and complete surveys. During the interview, they will recall past experiences in choosing treatments and discuss factors influencing their decisions. They will also use the CLL Mind Map, review Patient First information, and provide feedback on these tools' design and functionality.
- Who can participate: Adults over 18 with CLL/SLL or indolent NHL, treated or untreated, with computer and internet access, who can speak English and consent verbally.
- Study details: Participants will engage in a virtual interview and watch a demonstration of the CLL Mind Map. They will complete a survey and provide feedback on the usability of the CLL Mind Map and Patient First Resources.
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