Children and Adolescents with Obsessive-Compulsive Disorder: Comorbidity and Quality of Life

Abstract

The overall aim of the present thesis was to investigate important aspects of childhood obsessive–compulsive disorder (OCD) such as comorbidity and quality of life (QoL). Frequency and continuity of autistic symptoms from preschool age to later childhood in children with OCD were explored as a contribution to the ongoing nosological debate on whether there is an empirical base for summarizing conditions such as OCD, Tourette’s syndrome, eating disorders and autism spectrum disorders as parts of a so-called obsessive– compulsive spectrum. The establishment of proper outcome measures for the evaluation of treatment interventions has been a concern in the field (Pallanti et al., 2002). The measurement of symptom reduction only, without any assessment of subjective well-being, has been criticized (Macy et al., 2013). QoL assessment is a well-established outcome measure in somatic as well as in psychiatric treatment studies. However, in contrast to adult OCD, little is known about QoL in children with OCD and next to nothing is known about the role treatment plays in their QoL. To investigate QoL in children with OCD under different conditions (with and without comorbidity, before and after treatment) is relevant because of the paucity of studies concerning children. In the first study, comorbidity in terms of autistic traits was assessed in children and adolescents seeking treatment in a Swedish OCD Clinic (Gothenburg) and compared with controls from a general population sample. In the second study, QoL was assessed at baseline, and in the third study, both at baseline and after treatment with cognitive behavioural therapy (CBT) in children and adolescents with OCD enrolled in the Nordic Long-term OCD Treatment Study (NordLOTS) and compared with the general population. The NordLOTS is a Nordic multicentre study in which OCD treatment units for children and adolescents collaborated on common procedures for assessment, treatment and outcome evaluation (Thomsen et al., 2013). A manual for CBT with exposure and response prevention was established (Weidle et al., 2014). The QoL study included in this thesis comprised a sample of 135 children and adolescents, 7–17 years of age, with moderate to severe OCD according to the criteria of the Diagnostic and Statistical Manual of Mental Disorders (4th edition, text rev.) (DSM-IV-TR) (2000), including nine individuals with Asperger’s syndrome/high-functioning autism. QoL was assessed at baseline and after treatment with 14 sessions of CBT by self-report and caregiver proxy reports on the Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R) and compared with an age- and gender-matched sample from the general population. Social competence and school functioning were assessed with the Child Behaviour Checklist, comorbidity with the Kiddie Schedule for Affective Disorders and Schizophrenia (Present and Lifetime Version), severity of OCD with the Children’s Yale–Brown Obsessive Compulsive Scale and the families’ involvement with the child’s OCD symptoms with the Family Accommodation Scale. In addition, the significance of potential factors such as onset and duration of symptoms regarding QoL change were explored. Autism spectrum disorder (ASD) symptoms occurred in about one-fifth of children with OCD and were much more common than in the general population. However, the majority of OCD patients did not have these traits, indicating that ASD and OCD co-occur in a subgroup of cases rather than in OCD as a whole. In general, ASD symptoms reported in children with OCD did not show a strong enough relationship between OCD and ASD to support a classification of ASD as a part of an obsessive–compulsive spectrum group. However, a subgroup of paediatric OCD patients had significant subclinical ASD symptom levels. This should be considered when tailoring individual treatment interventions. QoL and social competence were markedly reduced in children with OCD, both in self-reports and in parents’ reports, compared with the general population. Children with higher comorbidity had lower QoL in parents’ proxy reports. After treatment, QoL ratings in treatment responders were in the same range as in the general population, while non-responders rated no change in QoL. Comorbidity, family accommodation and psychosocial functioning were not associated with changes in QoL after treatment. To the best of our knowledge, this is the largest QoL study of paediatric patients with OCD and the first one based on the assessment of OCD and comorbid disorders by standardized semi-structured diagnostic interviews, comparing patients with matched controls from the general population. It is also the first study assessing QoL changes after treatment in paediatric OCD. QoL assessment with the KINDL-R supported outcome measures for symptom reduction used in the study to define treatment outcomes. Based on our findings, we suggest employing QoL assessment in order to have a more comprehensive understanding of childhood OCD.