The CSC's Dr. Howard Abikoff is preparing to officially announce the culmination of a major study on ADHD and organizational skills, the seeds of which were planted 11 years ago.
The study shows that the approaches developed by Dr. Abikoff, Dr. Richard Gallagher and their colleagues at the CSC and at Duke University dramatically improve skills — organization, time management, and planning, or OTMP — in children who've been diagnosed with ADHD and had demonstrable deficits in those areas, prior to the treatment they received as study participants.
Because the study findings so clearly show the treatments' positive effects, the CSC has begun offering them to children ages 8-11 who meet the criteria. Read more about organizational skills strategies that are helpful for all children.
The editorial staff of AboutOurKids.org, the CSC's Web site, talked with Dr. Abikoff about how the study came about and what it means for families.
AOK: What lead to your interest in ADHD and organizational skills?
Dr. Abikoff: I've been trained as a behavioral psychologist. I was at Long Island Jewish Medical Center for 23 years and I had a practice there before coming to the CSC in 1996. I saw a lot of children with ADHD and their parents, and my work focused on helping children with difficulties they were having at school and home.
I began to feel more and more stymied by problems the children were having with organizational functioning, which created a great deal of distress for children and their parents. I would sometimes see children with IQs of over 140, very smart, who had so many problems in school related to their organizational difficulties. In addition, these difficulties often resulted in huge conflicts at home between the children and their parents, and constant arguing. "Where's your stuff?" "What do you mean you left it at school?" "What do you mean you don't know when the report is due?" "Why are you first starting this now when it's due in the morning and you have to read a whole book," etc., etc.
It led to a lot of angst; children were floundering in school, not doing nearly as well as they should have given their aptitude, their intelligence. They weren't deficient in math or reading skills. They were deficient in OTMP. It was affecting their school performance, their grades and their home lives. They were at sea.
AOK: Do all children with ADHD have difficulties with organizational skills?
Dr. Abikoff: Not every child with ADHD is impaired in OTMP—many are, but not all. It's an important subgroup.
AOK: How did you try to help children who were having difficulties in this area?
Dr. Abikoff: Well 10 years ago, the field was struggling because we didn't even have a way to measure organizational functioning, let alone treat it. When I worked with these children I made clinical decisions about what might be helpful. One of the approaches I tried was contingency management, in which, very simply, I worked with parents to reward their children for certain behaviors or when they met specific goals. In this case, parents were taught to reward their children when they demonstrated the organizational behaviors they were having difficulty with, for example, turning in homework on time, or remembering to bring home all their materials.
But some children just didn't seem to be able to do it. No matter what the parents were doing to help or what incentives they were offering, some children just didn't know how to perform these behaviors.
I wanted to try a different approach to see if I could help them develop the skills. But I realized this was going to be a long and arduous road, because I wasn't certain exactly where and how to focus on developing these skills, or even how to assess the extent and specific nature of a child's OTMP problems.
It became clear that we needed to be able to measure what it was we wanted to treat.
AOK: In fact, you did develop a measure, the Children's Organizational Skills Scale, or COSS, which is now used by a number of researchers who study ADHD. How did that come about?
Dr. Abikoff: After coming to the CSC, with the assistance of Dr. Gallagher, I received funding from a foundation to develop a questionnaire, a rating scale, that let us identify and measure the types of organizational difficulties children were having at home and in school. We developed versions of the scale that could be completed by teachers, parents, and the children themselves.
First we collected information about a large number of typical children, which we used to generate a set of norms for boys and girls from ages 8 to 13. These norms provided a picture of what a typical child looks like with regard to these organization and planning abilities at school and home. The information enabled us to assess children with ADHD, and to determine whether they were in fact deficient in these areas, and by how much, relative to typical children.
AOK: How did you decide what questions to put on the COSS?
Dr. Abikoff: First and foremost we relied on our clinical observations. While working with these children and their families, Dr. Gallagher and I were aware of organizational difficulties that were affecting children's functioning at school and at home. We also held focus groups with parents of children with ADHD, where we asked parents to share with us the organizational behaviors their children were doing and not doing that were creating problems.
We did the same thing with teachers who had ADHD children in their class, asking them about the organizational issues that were creating problems for these children, in terms of what they did poorly, or didn't do at all. We also spoke to colleagues and other clinicians. This helped us compile a large number of potential items that might be included in the questionnaire. We then used various methods to cull out and revise the content of the questionnaire so that it was informative without being redundant.
Once we had this scale, we were able to use it to assess children's organizational difficulties and evaluate the effects of potential treatments. It becomes a wonderful measure of outcome.
AOK: So once you had that tool, you were ready to embark on the research that eventually led to the current study.
Dr. Abikoff: Yes, once we had that scale, we were in a good position to seek funding from the National Institute for Mental Health (NIMH). Around that time, the NIMH issued a request asking for applications to develop and test novel interventions for ADHD. The timing couldn't have been better for us. We received a three-year treatment development grant, which enabled us to begin our initial work in this area, and led to the development and testing of our treatment in a pilot study.
The approach that we emphasized was skills building. Based on our clinical observations, we considered that many children were doing poorly because they didn't know how to do these OTMP behaviors. It wasn't that they chose not to do these behaviors, but rather that they were not picking them up from parents or teachers in the way other children might. Working from that assumption, we set out to develop an intervention that involved skills-based training.
AOK: Did you look only at children with both ADHD and organizational skills deficits?
Dr. Abikoff: Yes, that's right. We did not want to enroll in the study children with ADHD who did not need this type of treatment. We focused on the subgroup of children that were deficient in this area and whose deficits were interfering with their functioning at school and at home.
AOK: What did you learn from the pilot study?
Dr. Abikoff: Treatment development is an iterative process. We started with initial ideas about the treatment methods and content and used them with children with ADHD who had OTMP problems. We then took a step back to see what seemed to be useful and what needed to be changed or added.
One of the things we found out almost immediately was that working with the child and parent once a week was not sufficient. It didn't surprise us. Among the requirements for skills building are opportunities for the child to practice the skills and receive feedback, and for the therapist to regularly meet with the child and assess progress and problems. We knew from the outset that if we developed an intervention and found that it was useful, we had to make sure it could likely be implemented with children being treated in clinical settings and not just those receiving treatment in a research study. For instance, it was clear that three times a week was too demanding for families. We decided on twice a week treatment sessions, and that worked out well.
The treatment approach we developed is fully manualized, meaning that there are detailed descriptions for the therapist regarding what needs to be done in each session. I don't mean it's a script that the therapist follows in a rote fashion; rather, it includes specific information and steps that should be covered in each session.
AOK: Can you describe the approach?
Dr. Abikoff: We relied on a procedure known as task analysis. We began by considering what we would like the child to be able to accomplish. We then worked backwards to identify all the actions that needed to be done, starting from the first step, to get the desired result. In some ways it's similar to learning how to ride a bike or swim, where you start out practicing and learning simple, specific skills, which you then build on.
We met with the child in the clinic twice-a-week after school. The parent joined us at the end of each session. Because the parents were partners in the treatment process, they had to be aware of what skills their child was practicing and learning in the sessions. Parents helped to support these skills by prompting their child to use them when needed and rewarding their child for using the skills. We used the same approach with the children's teachers. We made the parents and teachers aware of what the child was learning and what they needed to do to facilitate this learning. We focused on the areas of materials management, time management, planning and organized actions, and developed materials, techniques and procedures in support of our skills-based, step-by-step approach.
AOK: What was the outcome of the pilot study?
Dr. Abikoff: The pilot study had three goals: first, to find out if we could develop a skills-based treatment; second, was it feasible to deliver; and third, could we obtain an indication of its possible effectiveness. And we met all three goals.
We worked with 20 children. Nobody dropped out of treatment. The ratings of satisfaction from parents and teachers were very high, and more importantly, at the end of treatment, the children showed significant improvement in their organizational functioning at school and home and in their homework behaviors.
However, this was an uncontrolled pilot study, so our work was far from over. Our next step was to try to obtain funding to evaluate the treatment in a large study with a control group – that is, to conduct a randomized controlled trial, or RCT. We were successful; our NIMH grant application was funded, and this led to the current study.
AOK: How big was the current study?
Dr. Abikoff: I believe it's the largest trial of its kind. In total, 180 3rd – 5th grade children with ADHD and OTMP deficits participated at the CSC and Duke University. Prior to this study I participated with six other principal investigators in the largest clinical treatment study of ADHD ever done, known as the MTA study, which included 579 children from seven university medical centers in the U.S. and Canada. Before the MTA study, I was involved in another dual-site treatment study with colleagues in Montreal in another of the largest ADHD clinical trials, which included 104 children.
I would like to point out that studies done by pharmaceutical companies often enroll very large samples, with many hundreds of children. In contrast to what happens in these trials, where the treatment involves giving the children medication, our study involves working extensively with the children, parents and teachers. In comparison to most behavioral treatment studies, our current study is quite large, which is important, because it gives us a lot of confidence in the findings.
AOK: How did this study expand on the pilot?
Dr. Abikoff: First, we wanted to evaluate the skills training approach relative to a control group, where the children aren't treated at all. The addition of this group is very important because it controls for time and multiple assessments, which may result in changes in children's behavior not due to treatment. But we wanted to go beyond just including this control group.
Based on our clinical observations we had assumed that these children weren't doing well because they had organizational skills deficits, and that the best way to address this problem was to provide them with skills training. However, there is an alternative, viable explanation regarding the children's OTMP difficulties. It's possible that the children don't lack the skills per se, but rather that they don't perform these behaviors when they're supposed to. The children may find these behaviors aversive and avoid doing them because they take a lot of effort, or the tasks are boring and tedious to perform, or because they seek out or get distracted by more stimulating tasks.
So rather than reflecting a skills deficit, the children's problems may stem from what is called a performance deficit; that is, they have the knowledge and skills but they're not performing the behaviors, such as bringing items they need to class, completing homework or studying for a test, when they should.
AOK: So if this is the case, that it's a performance deficit, how do you treat it?
Dr. Abikoff: You don't teach the skill, instead you focus on the child's performance and reward the "end-point " behavior. In the skills deficit approach you work backwards from the end-point and focus on teaching the children all the sub-steps and skills needed to get there. This approach is not relevant for a performance model, because you assume the skills are present and the problem is that the child is not doing the desired behavior when it's required.
There is a long-standing, established behavioral intervention called contingency management that's well suited to the performance deficit model. This approach, which many parents are familiar with, involves rewarding the child when they do something that is required. It's the "when-then" connection — "when" you do this, "then" you get that — and it is commonly used by many parents. For example, "Jimmy, once you finish your homework, then you can watch TV."
So we developed a systematic contingency management intervention just as we did for skills training. We partnered with clinical researchers at Duke who had a great deal of expertise in contingency management, and we wrote and developed another treatment manual, which was based on a performance deficit model. The treatment was called PATHKO, which stood for Parents and Teachers Helping Kids Organize.
So our current study included three groups: a wait-list control group, where the children received no treatment until after the waiting period; the OST, or Organizational Skills Training intervention approach; and PATHKO, the contingency management intervention, which excluded skills training and rewarded the children for performance.
AOK: What are some of the differences in the two treatments, in terms of actual therapy sessions?
Dr. Abikoff: The differences between PATHKO and OST are stark. In OST, almost all the work is done with the children, and the parents come in at the end of the session and learn what skill their child has been working on, and what they can do at home to facilitate their child's skills practice and use. In PATHKO, most of the session is held with the parents, and it includes contact with the teacher as well. We teach the parents how to systematically define, monitor, track, and reward specific end behaviors. The children come in at the end of the session and discuss with the therapist and parent the rewards they can earn when they show specific end-point OTMP behaviors.
AOK: What can you tell us about the results?
Dr. Abikoff: Our initial findings indicate that the treatments are very beneficial. The children in the two treatment groups improved substantially at home and school while the children in the wait-list hardly changed at all. This is a very important finding, because it means we now have treatments that can help these children become more organized and better able to manage their materials and time at home and school. There are some outcomes where the children in OST did better than those in PATHKO, but on most measures the treatments appeared comparable.
AOK: Do some children with ADHD grow out of their organizational skills problems on their own?
Dr. Abikoff: In general, the opposite is true. These problems tend to worsen over time as the children get older and move on with their schooling. As the demands increase for organization, planning, and effective and efficient management of time and materials, these deficits increasingly interfere with functioning. The children can get overwhelmed trying to manage multi-tasking demands in school, at home, and in other aspects of their lives. If not addressed, these OTMP difficulties can have serious implications for their functioning in school and when they move on and get jobs outside of school.
AOK: For some children, stimulants can be a very effective treatment for ADHD. Were any of the children in the study on medication? What role does that play?
Dr. Abikoff: Almost 40 percent of the children in this study came in on medication. It's not surprising, because we had conducted a study that found that if you treat children who have these organizational skills deficits with medication, some do better in their OTMP functioning, and some don't. The children who came into the current study on medication are examples of youngsters with ADHD who still had OTMP problems even with medication treatment.
So for many children with these problems, medication alone is not enough. The treatments we've developed are beneficial regardless of whether or not children are on medication.
AOK: What questions are you still looking at?
Dr. Abikoff: There are many issues we have not yet addressed. We want to examine the data to see if we can identify children for whom one treatment might be better than the other. We also don't yet know what happens over time, after treatment has ended. The follow-up findings regarding how well children maintain their gains over time will have important clinical implications. At the end of the day, even though we have two effective treatments, it is very important to know how these children fare after treatment, when they, their parents and teachers have stopped working with the therapist. How well do the effects of treatment stick? We hypothesized that the children who received OST, if they learned a skill, may be able to maintain their gains better than children who were rewarded for meeting end-point goals. Once all the follow-up data have been collected and analyzed we will be in a position to test this hypothesis.
There is still a lot more work to do in this area, but meanwhile we will begin offering these treatments to families at the CSC. We have strong evidence that both approaches work and have therapists who are trained in these treatments. We are quite excited about this addition to our ADHD clinical service.