Participant Experiences at 22q11.2 Research Center and Clinic
Participant Experiences for the Risk/Protective Factors in Psychosis Study
The study requires two visit days, usually occurring on a Monday and Tuesday. We will provide travel and accommodation to the MIND Institute. For over a decade, we have tried to make our research participation a fun and interesting experience. In fact, many parents have reported how much their children enjoyed their visit and quite a few youngsters have begged to (and even been able to) come back for more! Our newest project, on understanding the factors from cognition, emotion, and stress that either protect against or create risk for unusual (psychotic-like) thinking in adolescents and adults with 22q11.2DS is a longitudinal study. That means that it requires EVERY participant to come to the MIND for 2 visits, first when they are aged 12-18 years old and then again about 2.5 to 3 years later.
In this study, the 1st day of what is usually a 2-day visit, involves the participant completing several tasks on a computer. There will also be an MRI of each participant’s brain to gather images of anatomy and the connections between brain regions that are structurally established or which result just when the mind is at rest. Also the first day will likely involve a detailed “clinical interview” for each participant with 22q11.2DS and his or her parent/guardian to clearly assess the participant’s current state of thinking, feeling, mood and other behavioral/psychiatric status.
The computer tasks are designed to assess specific cognitive abilities as well as the impact of emotional content on the participant’s ability to control those abilities. We have chosen the tasks to assess several aspects of what are usually referred to as “cognitive control” and “executive function”. These are abilities that show noticeable impairments in people who show signs of psychotic thinking. Here are two examples of the tasks that we use, each of which has two versions, i.e. with and without emotional content included.
In one activity, we will ask the participant to look for a certain color of circle (red, blue, or green). The participant will sit in front of a computer screen and three circles will appear on screen. The participant will press one button on a game controller if s/he saw the circle of that color in the middle of the three circles. He or she will press a different button if the middle circle was any other color. Sometimes, the middle circle won’t be the color the participant was looking for, but one of the circles to the left or the right will be. We are interested in how the distracting circles affect participants’ attention. We will be able to check which circle the participant was paying attention to using a special cap called an EEG cap (described below). This will measure brain signals that we can use to check what location on screen the participant was paying attention to.
Example stimuli from attention task
In the emotional version of this activity, we will ask the participant to look for a certain emotion (happy, calm, or angry). The participant will then see three faces appear on screen. The participant will press one button on the game controller if s/he saw the face of the emotion in the middle of the three faces. If they saw any other emotion, s/he will press a different button. Again, sometimes the faces to the left and right will be the emotion the participant is looking for, even though the middle face is not. We will check where the participant’s attention is when the faces to either side may distract them, the same way we do with the circles.
Example stimuli from emotional attention task
In the next activity the participant will see different pictures appear on the screen. Each picture will either be a mole or a vegetable. We will ask the participant to press a button whenever s/he sees a mole, but to do nothing whenever a vegetable appears. We will measure brain signals from times when the participant thinks s/he should press the button, but actually should not.
Example stimulus from inhibition task
In the emotional version of this activity the participant will see different faces appear on screen. The faces will be happy, calm, or angry. We will ask the participant to press a button whenever s/he sees an emotional face (happy or angry) but not a calm face. We will measure if the participant makes more mistakes in the emotional version (faces) than the non-emotional version (moles) of this activity. We will check if the brain signals related to the calm faces are similar to the brain signals related to the vegetables. We will also look at brain signals that might mean the participant is thinking about the emotions of the faces.
Example stimulus from emotional inhibition task
The two tasks described above, but not others in the study will actually take place in the MIND Institute “ERP Lab” in order to assess brain responses to certain aspects of the tasks at the same time that behavior, and stress hormone levels, are being measured. ERP stands for “Event Related Potential.” We measure ERPs using an EEG cap worn on the head. The EEG cap is painless and feels similar to a cloth swim cap. It holds small metal electrodes against the participant’s head. The electrodes are not inserted the skin; they just rest against it. They also don’t produce any electricity; they just measure the electrical signals from the participant’s brain! EEG can be used to measure different types of brainwaves that occur over a long period (continuous EEG), but we will be looking at ERPs (Event Related Potentials). ERPs are brain signals that are generated in the brain in response to a short event (less than a second!), like a picture or a sound. An event could be seeing an angry face, paying attention to a circle on the left side of the screen, or making a mistake during an activity. ERPs will allow us to learn about the participant’s reactions and thoughts during the activities!
The soft cap with EEG electrodes
Electrode wires that are connected to the cap
Getting “wired up” and then doing a task in an ERP lab
Since one of our new, very important, areas of interest is the role of stress on emotional and cognitive functioning, we will collect 5 cortisol samples during the first day of the visit, one in the morning, as well as one before, during and after the process of completing tasks in conjunction with ERP. Cortisol is a hormone that is released in response to stress. It can be easily collected in saliva and so we will ask each participant to chew briefly on a small cotton swab (pictured below) that we then put in a collection tube. These swabs will then be sent for analysis so that we can analyze how stress hormone levels relate to specific measures of behavior, brain and cognitive functioning.
Cortisol collection swab and storage tube
During another part of the visit, we will travel a few blocks to the U.C. Davis Imaging Research Center where the participant will be able to experience the "look and feel" of an MRI scanner and to become comfortable with the process. Here, we have a fully equipped simulator that creates the entire experience of our research scans in the MRI scanner. In the simulator, the participant will watch part of a movie of their choice while we simulate the structural brain imaging scans. The movie is a great way to help the participant understand what it is like to lie really still and also how to block out the distracting noise of the scanner. We have an extensive DVD library of movies but participants are encouraged to bring his or her favorite movie too, during the mock and actual scan if desired. The simulator is used to help participants have an idea of what a real scan will be like. During the simulated scan, the sounds of a real scanner are played and the movement of the participant’s head is monitored to help him or her learn how still to lie during the real scan. If there is too much movement, the movie is frozen for a few seconds to indicate that the actual MRI pictures would be blurred with that amount of motion. The simulated scan is usually fairly short in duration. However, if necessary, participants can stay in for longer to practice the scan until he or she is completely comfortable with it and ready to try the real thing.
A participant watching a movie in our practice scanner & having completed the MRI
There is no radiation in the MRI scan and the procedure is very safe so long as no metal objects are brought into the scanner room. This is because MRI uses an extremely strong magnetic field, which is NEVER turned off, and so we must screen carefully for metal in or on the body before carrying out the scan. Unfortunately, metal dental braces disturb the pictures and we cannot scan participants when they have braces. It is ESSENTIAL that any medical implants or other devices or objects in the participant’s body be declared to us during the screening process. Most of these are safe for scanning but it is not safe to assume anything so we need to know all information in order to fully and carefully review the safety of carrying out a scan. It is your or your child’s safety that we are assessing during this process, so please be clear about all objects that could be of any potential concern. Once the MRI scan is completed, participants will receive a CD containing their brain images to take home.
So long as the schedule allows, participants will undergo a neuropsychological evaluation, the details of which vary depending on individual needs. Most participants will spend 4-5 hours, including breaks, with one of the MIND Institute psychologists who are very experienced with testing a wide range of children and young adults. Evaluations usually consist of pencil and paper activities that involve puzzles, memory tests and other similar activities. The neuropsychological testing provides a broad assessment of intellectual and academic abilities using standardized measures that can measure your child's (or your) abilities against that of the general population. In this way, these tests complement the highly specific, experimental and non-standardized experiments (i.e. the computer games) in the experimental lab portion of the study. At a later date after the neuropsychological testing is complete you will receive a letter explaining the results and characterizing your child's (or your) performance. You may find this useful for your own curiosity or you may choose to share this information with your child or your child's school, employer, or other professionals. See the 22q Healthy Minds Clinic page for information about the more extensive psychological assessment currently available for children with chromosome 22q11.2 deletion syndrome.
One of the most important new additions to our research program is the inclusion of an intensive interview with a highly trained clinician to understand the nature and content of each participant’s thinking, feeling, motivation and other behavioral characteristics. This is known as the “Structured Interview for Prodromal Symptoms”. It is designed to detect the presence (or absence) of the earliest signs of behaviors related to the “schizophrenia prodrome”, a set of behavioral characteristics that is common to many people who have an increased risk for developing schizophrenia, even if that happens to a very small percentage of those showing the “prodrome”. It assess both the positive symptoms (new things such as unusual thinking) that start to appear when people show signs of schizophrenia risk and negative symptoms (loss of previously existing characteristics like motivation, enjoyment or personal hygiene) that can also increase when people show signs of schizophrenia risk. Not only will this interview allow our team to measure how strong or weak these early signs are in each participant, it will also provide data that we will be using to develop a new, more sensitive measure of risk that we hope to use in order to guide early detection and intervention. This interview, and related questions will take several hours to complete. Another similar interview will also be carried out with the participant’s parent/guardian who accompanies them to the visit
As a Thank-You, each participant will receive $60 in gift cards for the first visit and $120 in gift cards when they come back for their 2nd visit 2.5 to 3 years later.
Parenting and Adaptive Functioning in Children Study Experience
This study is approximately 3 - 4 hours with the first hour involving consent and a few Parent-Child activities. These activities include, playing with a Mr. Potato Head, having story time, doing a puzzle, and folding paper into fun shapes (origami). Each activity will last approximately five minutes. The second hour will include a parent interview while your child works with another clinician to do IQ testing. The last two hours will include a computer activity and card game for your child to do with our experimenter. We have snacks available in our research clinic area for all participants, but if your child is on a particular diet or has special allergies, then it would be best to bring some snacks from home. The study time is usually from 8am - 12pm, so that families will be done by lunch time, unfortunately we do not provide lunch. There is also a cafe located in our building just in case you and your child would like more options. We will also be giving your child a $40 gift card to Target as a thank you gift for helping us with our research. An assessment report from our clinicians will also be written up for your records. It will include information gathered from the IQ testing, questionnaires, and interview.