While researchers have known for some time that adults with Obsessive-Compulsive Disorder have a lower quality of life, a recent study has found that children with OCD experience a similar drop in quality of life.

The new study is one component of a larger Scandinavian treatment study — the Nordic Long-term OCD Treatment Study — that explores the effects of cognitive behavioral therapy as opposed to selective serotonin reuptake inhibitor medications on quality of life. Whereas studies traditionally focus on symptom reduction, this study was unique in its focus on quality of life in children. It also was distinguished by its scope — according to the study abstract, it was the largest quality of life pediatric OCD study ever conducted. The study was published on Oct. 29 in the Health and Quality of Life Outcomes Journal.

“We found that quality of life was markedly reduced in children with OCD, especially in those with comorbid psychiatric disorders,” said Per Hove Thomsen, a clinical professor and researcher at Aarhus University in Denmark.

The research is part of a two-step randomized control study assessing 135 children and adolescents, Thomsen said. Self-reports and caregiver’s reports on a health-related questionnaire provided comprehensive data about the children’s quality of life. The researchers also assessed social competence and school functioning and compared the data they compiled to an age-and-sex matched sample from the general population.

“We suggest that assessment of quality of life [be] included in future studies on OCD,” Thomsen said.

But, according to James Leckman, a Yale professor of child psychiatry, psychology and pediatrics, studying quality of life in children with OCD is often difficult because many children demonstrate OCD symptoms even when they do not have the disorder. He added that parents often do not have their children diagnosed until they have exhibited aggressive symptoms. Furthermore, not all families have access to psychiatrists who can diagnose the disorder.

Leckman added that though this study focuses on OCD at large, the disorder manifests itself in significantly different ways — from collecting and hoarding to cleaning excessively to having intrusive thoughts where the child fears that their family will be harmed.

Variety in OCD is not the only difficulty facing researchers. Studies involving youth are often complicated because the child might be hesitant or unable to share about their symptoms. This creates a reporting problem — children are only fully capable of explaining their experiences after their symptoms have been treated, Leckman said. The study also noted that a family’s ability to respond effectively to OCD symptoms is hard to gauge.

“This is a situation where largely unwittingly, parents, in an effort to relieve their child’s anxiety, will offer reassurance whenever the child is asking for the reassurance, in a compulsive way,” Leckman said. “And in doing so, that actually creates the need for the child to ask even more frequently.”

Similar issues compound treatment, Johns Hopkins professor of psychiatry and behavioral sciences Marcos Grados said. Grados noted that parents often do not act until the child’s behavior becomes physically disruptive within the home.

If the child him or herself is not motivated to work on addressing symptoms, it is unlikely that therapy will be successful, Leckman said, noting that treating OCD is “easier said than done.”

“[OCD] definitely [has] an impact on the life of the children and their families,” Grados said.

Because the study sample consisted mostly of relatively well-educated families of Caucasian origin, future research will need to address cross-cultural, demographic and socioeconomic differences to understand OCD’s impact on children’s quality of life, the study abstract noted.

The study is registered in Current Controlled Trials; Nordic Long-term Obsessive Compulsive Disorder Treatment Study.

According to the National Institutes of Mental Health, one-third of adults with OCD developed symptoms as children.