Quality of Life Studies

Listed below are opportunities for people who enjoy participating in surveys or would like to participate in quality of life research. If you would like to learn more about any of these projects, please contact the sponsors directly.

Childhood Brain Tumor Survivor Study

If your child:

• had a diagnosis of a brain tumor
• is currently between 7 years old and less than age 18
• has been off-treatment for his/her brain tumor for at least one year

If you:

• had a diagnosis of a brain tumor
• are currently between 18 and 21 years old
• have been off-treatment for your brain tumor at least one year

You and/or your child are invited to complete an on-line survey to validate the Pediatric Functional Assessment of Cancer Therapy - Childhood Brain Tumor Survivors (version 2). This study is funded by the American Brain Tumor Association and Children's Memorial Hospital, Chicago.

Accurately measuring health-related quality of life is an important first step in improving patient/family and physician communication and it promotes and improves quality of care and patient/family satisfaction. To achieve this goal, a tool targeting experiences of brain tumor survivors is vital. Using a series of qualitative interviews of patients, parents, clinicians and teachers and a quantitative analysis of data collected in an earlier study, we developed a tool to measure the quality of life for childhood brain tumor survivors: Pediatric Functional Assessment of Cancer Therapy - Childhood Brain Tumor Survivors (version 1). Improvements were made to version 1 and, in order to expand the scale and to monitor survivors' quality of life across their life span, we are currently testing this version, and request your participation.

If you are interested in participating, please visit www.qualityoflifesurvey.net/CNS-QOL.You will be directed to information regarding participation. If you have any questions, please contact the research team at CNS-QOL@enh.org or 877-327-8077.

Study of the Financial Impact of Brain Tumor Treatment

Help us understand financial issues involved in going through treatment for brain tumors.

Who are we?
We are a group of nurses, doctors, and health economists from the University of Pittsburgh and the University of Pittsburgh Cancer Institute

What are we doing?
We are conducting a study to explore the out of pocket costs of cancer treatment and how those costs may be affecting you.

Why are we doing it?
We are conducting the study to better understand the needs of persons with cancer so that we can help people in the future.

Who are we inviting to participate?
In this ABTA news announcement, we are inviting persons over 18 who are actively receiving chemotherapy or radiation for a brain tumor, and whose treatment started at least 3 months ago.

What will I have to do if I agree to participate?
We will call you one time over the phone and spend about 45 minutes to an hour asking you questions about how the costs of cancer care have affected you.

Is there any compensation for being in the study?
You will receive a $15 gift card after you complete your interview.

What if I don't have any concerns about money?
We want to talk to people who are worried about finances and those who are not. By looking at all different situations, we will be better able to help those that need it.

What do I do if I want to participate?
Please call our toll free number at 1-866-834-5447. We will mail you a consent form. Once we receive it back, we will set up a time to talk to you over the phone.

current as of April, 2007