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

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Abstract

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.

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Acknowledgements

Thomas Jozefiak has kindly contributed to the project with norm data from his study on students from the general population.

Funding

TrygFonden and Aarhus University.

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Authors and Affiliations

  1. Department of Child and Adolescent Psychiatry, Aarhus University Hospital, Psychiatry, Denmark

    Sanne Jensen, Katja A. Hybel, Davíð R. M. A. Højgaard, Judith Becker Nissen, Anders Helles Carlsen & Per Hove Thomsen

  2. Regional Centre for Child and Youth Mental Health and Child Welfare Central Norway, Norwegian University of Science and Technology, Trondheim, Norway

    Bernhard Weidle & Tord Ivarsson

  3. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden

    Tord Ivarsson & Karin Melin

  4. Faculty of Psychology, University of Iceland, Reykjavik, Iceland

    Gudmundur Skarphedinsson

  5. Department of Child and Adolescent Psychiatry, Region Västra Götaland, Sahlgrenska University Hospital, Gothenburg, Sweden

    Karin Melin

  6. Akershus University Hospital, Oslo, Norway

    Nor Christian Torp

  7. Department of Public Health and Center for Healthy Aging, University of Copenhagen, , Copenhagen, Denmark

    Erik Lykke Mortensen

  8. Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, & Stockholm Health Care Services, Region Stockholm, Sweden

    Fabian Lenhard

  9. Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, USA

    Scott Compton

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  1. Sanne Jensen
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Correspondence to Sanne Jensen.

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Conflicts of interest

Tord Ivarsson has served on the speaker’s bureau of Shire Sweden. The remaining authors declare that they have no conflicts of interest.

Ethical approval

The study has been approved by the National Ethical Committees and data authorities in Denmark, Norway, and Sweden, and patients and parents provided written consent.

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Jensen, S., Hybel, K.A., Højgaard, D.R.M.A. et al. Quality of life in pediatric patients with obsessive–compulsive disorder during and 3 years after stepped-care treatment. Eur Child Adolesc Psychiatry 31, 1377–1389 (2022). https://doi.org/10.1007/s00787-021-01775-w

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