We’re committed to making a real difference in the mental health of children and teens.
Weekly family therapy sessions are helping 5-year-old DaShawn Smither cope with a behavioral disorder he’s had since toddlerhood. His mother, Jennie Smither, is one of about 60 parents testing a new Web-based tool designed to track how their therapy is progressing.
With most medical conditions, you can objectively verify whether treatment is having the desired effect. An X-ray testifies as to whether the broken bone is knitting together; a blood test proves the infection is gone.
But there’s no lab test for mental health. Determining whether treatment for mental illness is working has typically been based on the subjective impressions of the person providing the treatment.
The lack of objective evidence about the effectiveness of treatment has important implications, says Dr. Matthew Speltz, a psychologist and researcher at Seattle Children’s. How do you know when to change or stop treatment if you don’t have a reliable way to tell whether it’s working? How do you know it will be worthwhile to stick with it, even when it’s difficult or expensive to do so?
Drs. Matt Speltz and Freda Liu are developing a Web-based tool to help determine whether or not mental health treatment is working for a particular patient.
Speltz and Drs. Freda Liu and Nathaniel Jungbluth are collaborating with Dr. Corey Fagan and Jon Hauser from the University of Washington to develop a Web-based measurement feedback system (MFS) for tracking the effectiveness of mental health treatment. The MFS was originally developed by Fagan for adults. Speltz and company are working with their UW colleagues to tailor it for children, teens and their families, and are testing it with patients receiving outpatient mental health services at Children’s.
Each week, a patient’s parents (and potentially even his teachers) log on to a secure Web page to answer questions about feelings and behaviors related to the child’s diagnosis and the goals for treatment.
If the patient is old enough to read, and to understand her diagnosis, she rates her own symptoms and progress by responding to statements like, “This week, I felt miserable or unhappy: never, not true, true, sometimes, often.”
The MFS takes the reports of patient, parents and teacher and displays each person’s input on graphs that show their view of the patient’s progress over time.
There’s no lab test for mental illness.
“Since teachers typically aren’t involved in our treatment process, they are just seeing the results or lack of results,” says Speltz. “Our hope is to make it quick and easy for teachers to weigh in at crucial points in the treatment to provide their impressions of the child’s progress.”
Jennie Smither is one of about 60 parents testing the new tool. Her son DaShawn has been treated for a behavioral disorder since he was a toddler. DaShawn, now 5, and his mom meet for weekly therapy with Jungbluth. Since DaShawn is so young, the therapy focuses on developing Smither’s parenting skills so she can help him regulate his emotions.
Smither says she appreciates that the tool is easy to use – she can fill it out on her home computer, smartphone or at a kiosk in the clinic waiting area. “Responding to the questions makes me think about what’s gone on in the past week before the session, so we can use the time in the session to focus more easily on goals.”
Jungbluth says the MFS is a valuable tool to shape the course of therapy week to week. “For example, let’s say today the plan was to talk about this skill or address this specific problem behavior that had been raised before. We call up the survey results at the start of session. Wow, mom is noticing her overreactivity was a lot higher this week. I ask about that, and sure enough there’s an example that’s very informative. Well, what went wrong there? So we spend some time deconstructing that.”
“I’m a pretty visual person,” Smither says. “I didn’t realize how much I liked using the tracking tool until we sat down and looked at the data. In the past, we just looked at the number of outbursts, but with it charted out on the graph, I can see DaShawn’s getting better.”
While it’s not as clear-cut as a lab test, the collaborative assessment that MFS offers could be an important step in the right direction.
A roadmap home
When police escorted Sarah Edwards’ son Marquee to Children’s Emergency Department (ED) for the third time, she knew it was no longer safe to have him in her home.
Although he’s only 8 years old, Marquee already has a long history of frequent violent outbursts, many of them aimed at his mother. Private outpatient therapy proved no match or his erratic, aggressive behavior. When he tried to steal her car, it was clear to Edwards that Marquee was beyond her coping skills. “It’s really hard when you’re afraid of your own kid,” she acknowledges.
Luckily, this time there was a bed available for Marquee in Children’s Inpatient Psychiatric Unit (IPU).
On any given day, the wait list for Children’s IPU holds the names of 15 to 30 children or teens in crisis. When there’s no bed available here, a child may need to wait up to 10 days at home or in an ED somewhere in the region.
“These are kids who are an imminent danger to themselves or others and have exhausted the resources in their community,” says Dr. Kelly Schloredt, who co-leads the IPU’s clinical team.
Worsening the situation is the fact that Children’s is one of only a few hospitals in Washington, Alaska, Montana and Idaho that consistently treats mentally ill kids under 12 and kids with autism as well as a mental disorder.
Over the next two years, Children’s will double the number of IPU beds, from the current 20 to a total of 41. Increasing capacity is important, says Schloredt, but so is making sure that the treatment kids are getting is effective.
Schloredt and her team have developed treatment “roadmaps” called clinical pathways to outline a plan for the child’s entire hospitalization, based on their diagnosis. So far, they’ve developed pathways for depressive disorders and disruptive behavior disorders – the two conditions that account for the vast majority of IPU patients.
1 in 5 kids experiences some form of mental illness.
“Clinical pathways enable us to talk with the family immediately about what we’ll be doing: here are the necessary activities for you and your child, here’s the evidence that these make a difference, and we’ll work with you to pass these on to your outpatient team at home,” says Schloredt.
That clinical pathway was Marquee’s road home. He’s now on effective medications, and has gained enough skills in regulating his emotions and behavior to live with his mom again.
For her part, Edwards is grateful for the nonjudgmental support of the IPU staff, and their ability to identify and connect her with resources in the community. One of the most valuable things, she says, is the parenting classes she attended as part of Marquee’s hospitalization. “It’s not intuitive to parent a kid with mental health issues.”
“Bigger than your disease”
Dr. Carin Cunningham specializes in helping kids and teens deal with the emotional and social aspects of a serious illness like Crohn’s disease. “My role is to help these kids maximize their potential,” she says.
Starting kindergarten is an exciting and stressful transition for any child. For Ethan Roberts, the stress was amplified by the fact that he was diagnosed with Crohn’s disease just before school began.
Crohn’s inflames the lining of the gastrointestinal tract, causing abdominal pain, fatigue, frequent diarrhea, and severely reducing the body’s ability to take in nutrients. Treatment involves drastic changes to the diet and time-consuming intravenous infusions of medications that cause more fatigue.
Although Ethan did OK at school, once safely home he would lash out at his parents in angry outbursts that seemed uncharacteristic. “We took Ethan to see two different psychiatrists, but they were like deer in the headlights,” says Ethan’s dad, Jeff Roberts. “They just didn’t get Crohn’s.”
Enter Dr. Carin Cunningham, a psychologist who specializes in treating kids with gastrointestinal diseases like Crohn’s. She knows the emotional and psychological toll that dealing with an intense, persistent illness can have on kids – even when they don’t have an underlying mental illness. That’s why Children’s is beginning to include psychologists as part of clinical teams for chronic conditions like Crohn’s, and life-threatening diseases like cancer.
“Dr. Cunningham helped Ethan see that his life is bigger than his disease.”
Ethan and his parents began seeing Cunningham several times a month. “We knew the minute we sat down with her that she understood Crohn’s,” Roberts says. “Her knowledge helped lift the weight off our shoulders. She’s able to treat the emotional and mental side of it – for him, and us.” Cunningham literally “wrote the book” on this topic; she’s the author of a comprehensive resource on the biopsychosocial aspects of gastrointestinal disorders in kids.
Jeff Roberts (pictured, right) says regular medication infusions keep his 8-year-old son Ethan’s Crohn’s disease under control, but it’s the coping strategies Ethan learned from pediatric psychologist Dr. Carin Cunningham that made it possible for Ethan to take back control of his life.
“It’s so hard to be a kid and go through this,” says Cunningham. “My goal is to help patients like Ethan deal with their illness so that it has the least impact on their development as a person, and also to help parents support their children. Most kids with Crohn’s just want to be kids and live their normal lives. My role is to help them do just that.”
Having a pediatric psychologist “embedded” in the care team means that both physicians and families have access to psychological resources right in clinic. “Plus,” says Cunningham, “it makes the transition easier and helps side-step any stigma about ‘seeing a psychologist’ when I’m just part of the team, like the nutritionist or child life specialist.”
Cunningham helped Ethan understand and control his body better, and find healthy ways to express what he needs to his parents.
For Roberts, the change is summed up in one of the main lessons that Cunningham taught his son, now 8 and in second grade. “She’s helped Ethan see that his life is bigger than his disease.”
Published in Connection magazine, September 2013