By S. Evelyn Stewart, M.D., Child Psychiatrist, MGH OCD Clinics, Assistant Professor, Harvard Medical School, USA
Reprinted with permission from the OCD Newsletter, Volume 22, Number 3, Summer 2008. Published by the OC Foundation Inc., USA.
Obsessive Compulsive Disorder (OCD) is one of the most common psychiatric illnesses affecting children and adolescents. Previously thought to be rare, OCD is reported to occur in 1-3% of people. It is the fourth most common mental illness after phobias, substance abuse, and major depression. OCD has peaks of onset at two different life phases: pre-adolescence and early adulthood. Around the ages of 10 to 12 years, the first peak of OCD cases occur. This time frequently coincides with increasing school and performance pressures, in addition to biologic changes of brain and body that accompany puberty.
The second peak occurs in early adulthood, also during a time of developmental transition, when educational and occupational stresses tend to be high. It has been argued that childhood-onset OCD may represent a unique subtype of the disorder with distinct characteristics. This article focuses on OCD as it occurs in children and adolescents, compared with OCD in adults.
Numerous OCD-affected adults had childhood-onset of their illness. Sadly, many of these individuals went through childhood before recognizing that they had OCD. Without an alternate explanation, they may have come to believe that they were ‘crazy’ or that they must keep their worries and behaviors as a shameful secret. Efforts are being made to increase awareness and recognition of this treatable illness within schools and in the general population.
OCD presentation is very similar across children, adolescents and adults. People with OCD have repetitive thoughts or images that they can’t control, and the anxiety caused by these thoughts leads to impulses or actions that are distressing, time-consuming or limiting to normal functioning. Of special note, the insistence on repetitive or ‘just right’ behaviours that occurs during the ‘terrible twos’ stage in toddlers is distinct from illness-related OCD symptoms. These serve as a part of normal child development, in contrast with OCD symptoms, which impair function and distract the child from learning normal developmental tasks. One way that childhood/adolescent OCD differs from OCD in adults is that youngsters may not always realise that their thoughts, worries or behaviours are excessive. For example, while an OCD affected adult may recognize that stopping a superstitious ritual is desirable, an OCD-affected child may view the ritual as a literally protective act (e.g., a child who doesn’t want to stop being afraid of germs or to stop repetitively washing, compared with an adult who desperately wants to be able to stop and to lose the worries).
A second distinction between OCD symptoms across age groups is the content of the disabling obsessions andcompulsions. All categories of adult OCD symptoms may appear in children and adolescents, including sexual, aggressive and religious obsessions. However, rates of these symptom types tend to differ by age. Religious and somatic (body or health-related) symptoms appear to be more common in child versus adolescent or adult groups and ordering and hoarding symptoms more common in child/adolescent versus adult groups. There are also symptoms that are particularly noted in children, including ‘just right’ obsessions, compulsions involving other persons such as parents, and superstitious rituals. Another OCD symptom in childhood is the intense fear or avoidance of a ‘contaminated’ sibling, leading to marked disruption of family functioning. Across the lifespan, OCD patients often experience more than one symptom type at one time, and symptoms also frequently change over the long-term course. There are groups of symptoms that tend to go together (these symptom groups are also known as symptom dimensions or factors). This is true for children, adolescents and adults. Although a person’s symptoms may change over time, it appears that they often stay within the same symptom group for a given individual. There are four groups commonly described, that include: 1) contamination and cleaning symptoms, 2) hoarding obsessions and compulsions, 3) symmetry/ordering/repeating symptoms and 4) aggressive/religious/sexual/somatic and checking symptoms. It is presently unclear whether childhood and adult-onset OCD differ significantly in terms of their long-term course. In the longest OCD study to date on adults, after an average time of 47 years from initial assessment, 20% of patients had no symptoms and 28% had some symptoms but not full OCD. A child OCD long-term outcome meta-analysis (an analysis of combined past studies) found that 40% had no OCD symptoms and 19% had some symptoms but not full OCD when they were seen at long-term follow-up.
Potential causes of OCD in children and adolescents
OCD is believed to result from a combination of genetic, biological and environmental risk factors that combine within a specific individual at a certain time point to trigger onset of the illness. Biological or environmental triggers may include a child’s immune system response to illnesses such as strep throat. This occurs in a reported OCD subgroup of childhood-onset cases called PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcus). Among children, genetic causes are thought to contribute approximately 45-65% of the risk for developing OCD. Studies have suggested that children often have differing OCD symptoms from their parents. This argues against the notion that OCD running in families is a pure a result of children imitating their parents’ OCD symptoms. Having a family history of OCD is currently one of the strongest risk predictors for developing OCD. However, this does not mean that every child of an OCD affected adult will develop this illness. Despite progress in the study of OCD genetics, no single ‘OCD gene’ has been identified as a major cause of OCD. From twin studies and family studies, genetics appear to play a larger role (having higher heritability rates) as a cause of childhood-onset versus adult-onset OCD. For example, relatives of adults with OCD possess a four-fold increased risk of developing the disorder (8%), whereas relatives of those with childhood-onset OCD have a five-to eight-fold increased risk of developing it (10-17%).
Treatment for OCD in children and adolescents
One of the first and most central aspects of OCD management for children is education. Both the child and family should be reassured that symptoms are in keeping with a known and treatable illness, rather than signaling ‘odd habits,’ misbehaviour or defiance. When lasting symptoms cause significant distress or impair family, school or social functioning, they can no longer be attributed to a passing phase. Frequently, learning that these symptoms are part of a known illness brings relief to both the child and family, by ‘demystifying’ the symptoms. Since OCD tends to worsen during times of stress, the relief associated with receiving an accurate diagnosis and treatment plan alone may lead to decreased symptom severity. Central tenets of OCD treatment are similar for childhood/adolescent and adult illness. These treatments include individual and family education, cognitive-behavioural therapy, cognitive therapy and medication management. Psychoeducation about OCD should include encouragement to minimise ritual frequency, family accommodation of symptoms and avoidance of places or activities that may trigger OCD symptoms. Although not formally studied, it is likely that families with OCD-affected children may be more inclined to attempt to ‘rescue’ the child from symptoms. Such behaviour may include conducting rituals for the child, allowing the child to avoid triggers, and responding to excessive reassurance-seeking. Unfortunately, all of these actions lead to worsening rather than improvement of OCD. The management steps beyond diagnosis and family education are to initiate cognitive-behaviour therapy (CBT) and/or a serotonin reuptake inhibitor (SRI) medication trial. Sadly, a majority of OCD affected children do not receive CBT as an initial part of their treatment plan. This is likely due to the limited community and hospital availability of CBT clinicians who are experienced with OCD. Most children who do begin CBT treatment are able to complete this approach (75%), and up to 70% of those doing CBT experience at least some improvement. Of note, treatment with either relaxation training, or ‘talking’ (psychodynamic) psychotherapy alone have not been shown to improve OCD. Serotonin-reuptake inhibitors, including selective serotonin-reuptake inhibitors (SSRI’s), and clomipramine are effective OCD treatments for children/adolescents. Between 60-70% of patients have a satisfactory response during the first two SRI trials. This form of treatment frequently leads to decrease in symptom severity rather than a ‘cure’ from symptoms, however. In addition, recent suggestions that these medications may lead to suicidal thinking in a small group of children require that special monitoring takes place, especially when starting or increasing dosage. Predictors of good response to initial OCD treatment in children (with CBT and/or an SRI) include awareness of having OCD, fewer obsessions and compulsions, less severe obsessions, lower academic and functional impairment, lower accommodation - related parental stress and absence of disruptive behaviour disorders.
Obsessive-compulsive disorder is a mental illness that frequently affects children and adolescents. It may be under-recognised by parents, teachers and other caregivers due to the secretive nature of the disorder and its associated shame. Prompt diagnosis of OCD among affected children and adolescents is necessary to limit suffering directly resulting from OCD, in addition to the distraction from normal childhood development that this illness brings. Fortunately, progress is being made in understanding the genetic and biologic underpinnings of the disorder. These advances will ideally lead to improved approaches for preventing, treating and, eventually, potentially curing this common childhood disorder.