Q: What is the purpose of the study?

A: We want to understand how you deal with pain, what your past experiences have been, and how your experience changes as you find ways to treat the pain. This understanding will help us to improve the treatment of other children with pain like yours.

Q: Who is doing the study?

A: The study is the work of a team of doctors and social scientists who are especially interested in helping young people with pain like yours. They come from the University of California in Los Angeles and the Cedars-Sinai Medical Center. If you want to know who they are, click here.

Q: Is the study meant for me?

A: If you are between the ages of 10 to 17 years old, live in Southern California, and have any kind of recurring pain, you might qualify to join the study, as long as you have the permission of a parent or guardian. If you qualify, then a family member or guardian will be asked to join the study with you.

Q: If I decide to join the study, what will I be asked to do?

A: We will ask you to do four things:

1. First, to help us get to know you, you and your parent or guardian will each fill out a form, answering simple questions about your pain problem and how you feel about your health and your daily life.
   
   
2. Second, we will interview you in your home. A member of our team will ask you some questions about your overall health and daily life. Your answers will be videotaped. You don’t have to answer any questions that you don’t want to answer.
   While you are being interviewed, another member of our team will interview your parent or guardian. That interview will also be videotaped.
   
   
3. Third, we will videotape your first appointment at the medical clinic. This will allow us to see how your doctor asks questions and explains things to you and how you and your family members share your experiences and feelings with the doctor.
   
   
4. Finally, six months after your first clinic appointment, we will ask you to fill out another form with questions, just like the ones you answered before, so we can learn about what you have experienced since we first met you. We will also ask you and your parent or guardian to meet with us for a second interview in your home. During this interview, we will ask you to talk about your experiences at the clinic and with any therapists you might have visited. These interviews should last less than two hours and will be videotaped. The study will end with this interview. That’s it!
   

Q: How long will the study take?

A: About six months, from the first home interview to the last.

Q: Where will I be interviewed?

A: We will meet in your home, at your family’s convenience.

Q: How long does each interview last?

A: Generally about 60-90 minutes.

Q: What are the risks to me if I join the study?

A: There is no more risk than if you were talking to a friend or teacher. We will ask you questions about your experiences, ideas, and feelings, and you can answer them or not, as you please.

Q: What are the benefits to me if I join the study?

A: The major benefit is that you will be helping other children who have pain like yours. What you tell us will help us understand what you have been feeling. This understanding may help doctors to give better treatment to patients just like you.

Q: Does it cost anything?

A: No, there is no cost to you or your family associated with the study.

Q: What if I change my mind and don't want to be in the study anymore?

A: You can change your mind and leave the study at any time. It will not affect your medical care in any way.

Q: Who will know that I'm in the study ?

A: The only people who will know that you are in the study are you, your family, and the members of the research team. No information about you will be given to others without your permission, with two exceptions: if necessary to protect your welfare (for example, if you need emergency care); or if required by law.

Q: Why do you use videotape?

A: We videotape our interviews so that researchers who study the experience of pain in the future will hear about your experiences directly from you. When we tape at the clinic, researchers will be able to observe directly what the doctors say to you and how you respond to them.

Q: What happens to the videotapes after the study ends?

A: The tapes can be disposed of in three ways. You will be asked to choose which one best suits you and your family:

1. The tapes may be stored in a special medical library at UCLA. You can choose to let qualified researchers begin studying them immediately under the supervision of library staff.
   
   or....
   
   
2. You have the right to keep the tapes at the medical library but to prevent researchers from studying them for any period up to 100 years. For example, if you request in 2006 that your tapes be blocked for 20 years, the library will allow researchers to see and hear them beginning in the year 2026.
   
   or....
   
   
3. If you do not wish the tapes to be saved at all, we will follow your instructions and destroy the tapes.
   At the end of the study, we will ask you which of these three choices you think is best for you. The choice will be yours.

Q: Can the interviewer or pain study team members answer questions about my medical treatment?

A: If you have any questions about your pain or your medical treatment, you should ask your doctor directly. The Pain Study team is not able to answer your medical questions.

Q: What if I have other questions about the study?

A: Please contact Marcia Meldrum with any questions you have about the study. You can reach Marcia by phone at (310) 794-6290 or by email at mlynnmel@earthlink.net.