A Computer Survey and Interview Study: Health and Pain in Children with JIA or Chronic Pain conditions (PROMIS)
What is the purpose of this study?
The long-term purpose of this study is to develop a computerized test to help doctors and researchers better measure how a child’s health makes him/her feel and how it affects what he/she does at home and at school. By participating in this study, you will be helping researchers to determine the best questions to ask to better measure health from the patient’s point of view.
Who can participate?
Your child may be eligible to take part in this study if he/she:
- has been diagnosed with a chronic or recurrent painful condition (e.g. JIA, fibromyalgia)
- is able to speak and read English and,
- is able to see and interact with a computer screen and mouse.
What is involved?
There are four parts to this study. Participation in all four parts is not necessary—parents and children may choose to take part in one, two, three, or all four parts depending on interest and eligibility:
* Interview: a one-on-one interview lasts approximately one hour and may be scheduled to take place before or after a regular clinic appointment.
* Focus Group: a focus group lasts approximately one hour and is composed of about 3-6 participants and 2-3 interviewers/researchers. Parents/guardians may also take part in focus groups.
* Pain Item Testing: pain item testing involves completion of a computer survey regarding experience with pain. These questions take about 25 minutes to complete. Parents/guardians may also take part in pain item testing.
* Multi-Visit Survey: the multi-visit portion involves completion of a computer survey regarding health, pain, and quality of life. These questions take about 20 minutes to complete. Participants are asked to complete questions on 3-4 separate visits.
What are the benefits?
If you agree to take part in this study, there will be no immediate direct medical benefit to you or your child. We hope the information learned from this study will benefit patients with chronic medical conditions in the future by improving the way that health status from the patient’s point of view is measured.
Will I get all the facts about the study?
Parents/guardians and children interested in participating will be given a consent form that thoroughly explains all of the details of the study. It goes over all of the procedures, the risks, the benefits, the compensation, who to contact with questions or concerns, and more. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered. Study procedures will not begin until a parent/guardian has signed this form and, if of age, the child has given at minimum his/her verbal agreement.
What are the risks and discomforts of the study?
There are no physical risks associated with this study. There is, however, the potential risk of loss of confidentiality. Every effort will be made to keep your and your child’s information confidential, however, this cannot be guaranteed. Some of the questions we will ask you and your child as part of this study may make you/your child feel uncomfortable. You/your child may refuse to answer any of the questions and may take a break at any time during the study. You/your child may stop participation in this study at any time.
Do participants receive pay, compensation or reimbursement?
For his/her time and effort, your child will be given $25 for participating in the Interview Study. You and/or your child will receive $25 for participating in a Focus Group. You and/or your child will receive $15 for participating in the Pain Item Testing. For the Multi-Visit Survey, $10 will be paid to your child each time he/she takes the test--the test will be taken a total of 3 to 4 times.
Who should I contact for more information?
Please contact the Research Coordinator to discuss participation in this study: Jennifer Farrell, 513-803-2891 or Jennifer.Farrell@cchmc.org.
Esi Morgan DeWitt, MD
Division of Rheumatology