A Study about Quality of Life and Patient Experience: What to Know and How to Participate
This study is supported by an HCL2030 research grant. It is being carried out by the Dana-Farber Cancer Institute in collaboration with the University of New Mexico Comprehensive Cancer Center.
WHY IS THIS STUDY IMPORTANT?
Quality of life and other patient-reported outcomes are important in hairy cell leukemia (HCL). However, researchers do not yet know which types of questions and measures best capture the HCL patient experience over time.
This study will help identify the most meaningful questionnaires to use for patients with HCL.
WHO CAN PARTICIPATE?
Patients who previously received treatment or re-treatment for classic HCL.
Residents of the United States or Canada.
HOW WILL THIS STUDY MAKE A DIFFERENCE?
Patients can help researchers:
Identify the quality-of-life (QOL) and patient-reported outcome tools that best reflect the HCL experience.
Determine how many survey questions are needed to capture meaningful changes in QOL over time.
Lay the groundwork for future pilot testing and integration of these tools into HCL care.
Improve how clinicians understand and monitor the experiences of people with HCL as they are near treatment.
WHAT WILL PARTICIPATION INVOLVE?
Patients who join the study will help researchers determine which combination of tools most accurately reflects the HCL patient experience when nearing treatment or re-treatment.
Participants will be asked to:
Review seven sample patient-reported outcomes and quality-of-life surveys.
Complete a brief questionnaire about the usefulness of each survey.
Take part in a confidential focus group (with a Zoom option) and provide feedback on the sample surveys.
HOW CAN YOU GET INVOLVED?
If you are interested, please fill out the form below.
The study team at Dana-Farber Cancer Institute will follow up with you to discuss next steps.
Participants will receive a $100 honorarium.