End of Life Treatment Preferences of Latino Medicare Beneficiaries With Cancer
This study will determine if the combination of declining health, cultural factors (such as
language of choice) and meeting the cultural and language needs of Latino cancer patients
influence end-of-life treatment choices over time.
If you decide to take part in this study, you will complete a questionnaire once a month for
12 months, over the telephone. The questionnaire asks you about your end of life and
decision making preferences, as well as questions about your health status and other basic
questions about you such as your education level, age, and health insurance. The first phone
questionnaire, the one you will answer today, will take about 30 - 40 minutes to complete.
The monthly surveys after today will take about 20 - 30 minutes to complete each month. You
will be considered off of the study in one year.
Should you become too ill and are unable to complete the surveys we will ask a proxy to
respond on your behalf. A proxy in this case, should be someone you trust, who knows you
well enough to know how to answer the health questionnaire on your behalf. A proxy is
usually a spouse, child, other close family member or friend. This person will only have to
answer questions about you. He or she will not answer any questions about him or herself.
We will ask you to provide us with the contact information of the person you select as your
"questionnaire proxy" today at the end of this consent form. If you are able to complete all
12 surveys, we will not contact the proxy.
Information from this study will be used only for research purposes. All identifying
information such as your name and address will be kept private. This information may be kept
at MD Anderson and University of Houston (UH) forever. You will be assigned a code number
so that your name will not be used. The research team at MD Anderson and UH will be able to
link the code number to your name. We will take appropriate steps to keep your survey
responses confidential. However, there is no guarantee of absolute confidentiality. Your
information will be protected according to state and federal law. The research team may
share study information with certain individuals including the National Institutes of Health
and institutional study monitors who verify the accuracy of the information to see that the
research is being conducted in a safe and correct manner.
Answering the survey questions over the phone may cause you to feel tired. The
questionnaires may involve topics that are sensitive in nature. You may refuse to answer any
question that makes you feel uncomfortable. If you have concerns after completing the
survey, you are encouraged to contact your doctor, the study chair, or MD Anderson's
Institutional Review Board.
Although there may be no benefits for you in this study, future patients may benefit from
what is learned in this study. Your participation in this research study is strictly
voluntary and you may choose not to take part in this study and/or stop the interview at any
time or to not answer any questions that make you feel uncomfortable. If you choose not to
take part in this study, you will not be penalized or lose benefits that you are entitled
to. You may choose to withdraw your consent to participate in the study at any time, without
loss of benefit to you.
Observational Model: Cohort, Time Perspective: Prospective
End of Life Treatment Preferences of Older Latinos With and Without Cancer (Survey Responses)
Survey of how changes in functional status influence End of Life (EOL) treatment preferences among older Latinos with cancer. EOL treatment preferences treated as a continuous variable (0-10) and functional status assessed using Patient-reported Eastern Cooperative Oncology Group (ECOG) Performance Scale where low functional status will be defined as an ECOG score of 3 or 4 and high as 0-2.
Once a month for 12 months
Isabel Torres, MPH, DRPH
UT MD Anderson Cancer Center
United States: Institutional Review Board
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