Obsessive compulsive disorder (OCD) is condition that affects about 2.2 million Americans and 750,000 people in the UK. It has two key features: thoughts that repeat themselves over and over again (called obsessive thoughts) and feeling that the person must do certain actions repeatedly (compulsions). The person thinks the thoughts are silly, but they cannot stop them. Sometimes only carrying out the actions stops the thoughts for a while. The typical example is thinking that your hands are dirty, even though you know they are not, and having to wash them repeatedly. The person can spend a huge chunk of the day carrying out these compulsions. This often makes it very difficult to function at all. This can be even more tragic when it affects a child.
I vividly remember a patient of mine I will call Leo for the purposes of telling his story. Leo’s mother brought him to my clinic when he was 8 years old. He was small for his age and quite slender, but, somehow, he had quite a presence. He would look at you in the eye and speak in precise well-crafted sentences. I remember having the impression that he was always mildly disappointed that adults — me included — did not quite live up to his expectations. He never came across as peevish or snooty; just seemed to take in the fact that you were flawed, but forgive you for it. His mother told me that he had been having some horrible thoughts for a while. He started avoiding his friends, spending increasingly more time in his room, and, most recently, refusing to go to school and to be with his mother for any period of time. She did not really know what those thoughts were, but she said that he had only told her he was worried about spending time with other people, as he thought he might hurt them.
When I interviewed him on his own with his mother waiting by the consulting room door, he told me that he was worried he was going to kill his friends, people at school, his mother, and other relatives. He did not want to do it, but every time he was with anybody — particularly anybody he cared about — he would have these horrible thoughts of him attacking them viciously. Sometimes he could see the whole horrible attack in his mind and it frightened him very much. That’s why he felt he couldn’t go to school or be with his mother or his friends; he was worried he would ‘lose control’ and attack them. I asked him if he had ever attacked anybody and he was horrified with the question. ‘Of course not, doctor,’ he replied in his precise tones. In fact, his mother later told me that he was a very peaceful and quiet child who had never started a fight in his life. The diagnosis was clear: OCD. The treatment presented a problem. At the time there was a very long waiting list for therapy in the clinic where I worked and I did not want to prescribe medication for a child when the obvious first choice was cognitive behavioral therapy. This lack of available and affordable therapy continues to be a serious problem for many children like Leo.
Internet-based CBT (ICBT) is a possible solution. The patient follows the same techniques as visiting a therapist, but does so more independently following a structured program. It is more successful when supported by a clinician, but it enables the clinician to only focus on problems and makes the intervention much more efficient. There is very good evidence of this approach being useful in adults, but would it work with someone like Leo.
Fabian Lenhard and colleagues have recently done a study on the cost-effectiveness of ICBT in comparison to untreated patients on a waiting list. The study was carried out in Sweden, on 67 adolescents (aged 12-17) each with a diagnosis of OCD. The interventions were either a 12-week ICBT course or waiting for treatment. The researchers carried out assessments before and after the treatment in both groups. Two types of costs were estimated: ICBT and any costs for the young people waiting for treatment. This included educational (being away from school) and medical costs. ICBT costs included clinician’s time and software costs.
After ICBT, 27% of the participants showed at least 35% decrease in symptoms, whilst not one person in the waitlist group showed an improvement. Also young people in the waiting group had greater healthcare costs. These findings suggest that ICBT is not only clinically beneficial for treatment, but also results in cost savings in comparison to leaving those with OCD untreated. For Leo this would have been ideal as he could still be on the waiting list, but already improving. As it turns out he did recover, but he had to wait longer than the 12 weeks that this study lasted. This is a great loss of opportunity at an age when education is so important. Given the type of child he was I think he would have been less disappointed with me if I had been able to offer something like this to him.