Quality of life in pediatric patients with obsessive–compulsive disorder during and 3 years after stepped-care treatment

Sanne Jensen*, Katja A. Hybel, Davíð R.M.A. Højgaard, Judith Becker Nissen, Bernhard Weidle, Tord Ivarsson, Guðmundur Ágúst Skarphéðinsson, Karin Melin, Nor Christian Torp, Anders Helles Carlsen, Erik Lykke Mortensen, Fabian Lenhard, Scott Compton, Per Hove Thomsen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


The present study aimed to investigate the long-term quality of life (QoL) in a large sample of pediatric obsessive–compulsive disorder (OCD) patients. The study included 220 pediatric OCD patients from the Nordic Long-term OCD Treatment Study (NordLOTS) who were evaluated at seven time points before, during, and after stepped-care treatment over a 3-year follow-up period. Data from three symptom severity trajectory classes formed the basis of the QoL evaluation: acute (n = 127, N = 147), slow (n = 46, N = 63), and limited responders (n = 47, N = 59). Patients’ QoL was assessed using parent and child ratings of the revised Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R). QoL was analyzed by trajectory class using a random mixed effects model. The association between pre-treatment factors and long-term QoL was investigated across classes in a multivariate model. Three years after treatment, the acute responder class had reached QoL levels from a general population, whereas the limited responder class had not. The slow responder class reached norm levels for the child-rated QoL only. Higher levels of co-occurring externalizing symptoms before treatment were associated with lower parent-rated QoL during follow-up, while adolescence and higher levels of co-occurring internalizing symptoms were associated with lower child-rated QoL during follow-up. For some patients, residual OCD symptoms in the years after treatment, even at levels below assumed clinical significance, are associated with compromised QoL. Co-occurring symptoms could be part of the explanation. Assessing QoL after OCD treatment, beyond the clinician-rated symptom severity, could detect patients in need of further treatment and/or assessment. Trial registry: Nordic Long-term Obsessive–Compulsive Disorder (OCD) Treatment Study; www.controlled-trials.com; ISRCTN66385119.

Original languageEnglish
JournalEuropean Child and Adolescent Psychiatry
Publication statusPublished - 21 Apr 2021

Bibliographical note

Publisher Copyright:
© 2021, Springer-Verlag GmbH Germany, part of Springer Nature.

Other keywords

  • Children and adolescents
  • Long-term
  • Obsessive–compulsive disorder
  • Quality of life
  • Stepped-care treatment
  • Treatment outcome


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