Obsessive-compulsive disorder (OCD) is a relatively prevalent mental disorder which often starts early in life. The disorder causes significant impairment in multiple domains, such as education, work life, and relationships. For obvious reasons, clinical trials primarily focus on measuring OCD symptom reduction. However, OCD symptom severity is only one of the many possible outcomes that matter to individuals with OCD. Because clinical OCD research is almost exclusively researcher-led, we know relatively little about the priorities of individuals with OCD. Input from relevant stakeholders is therefore needed to reach a consensus on what outcomes should be measured in clinical trials of OCD.
OCDCORE aims to develop a Core Outcome Set (COS) for clinical research in OCD across the lifespan. We are aware of existing COS for depression and anxiety disorders developed by the International Consortium for Health Outcomes Measurement, where OCD was included as one of the targeted disorders (Obbarius et al., 2017; Krause et al., 2021). This previous effort focused on people with a range of anxiety, depression, and stress-related disorders and on measures of symptom change. By contrast, OCDCORE focuses exclusively on OCD, and on the measurement of a much broader set of outcomes beyond symptom severity. To this end, we will collaborate closely with all stakeholder groups, including researchers, individuals with OCD and their representatives, informal caregivers (e.g., family members), and health professionals involved in the care for individuals with OCD.
Dr. Elles de Schipper, PI
Prof. David Mataix-Cols
Dr. Lorena Fernández de la Cruz
Affiliation:
Center for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
Disease Category: Mental health
Disease Name: Obsessive-compulsive disorder (OCD)
Age Range: 0 - 120
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Patient/ support group representatives
- Researchers
- COS for clinical trials or clinical research
- Recommendations for outcome measures (measurement/how)
- Consensus meeting
- Delphi process
The OCDCORE project group (PG; EdS, DMC, LFC) will put together a list of potentially relevant outcomes and request feedback from all stakeholder groups represented in the OCDCORE expert panel (EP). The finalized list will be the basis for an international Delphi process where participants from all stakeholder groups are asked to rate the outcomes with regards to how essential they are for the COS. The results from the Delphi process will be discussed in a consensus meeting with the OCDCORE EP and the outcomes to be included in the COS will be finalized.
The OCDCORE PG will then put together a list of instruments currently used in clinical research to measure the outcomes included in the COS and evaluate their suitability. The instruments will be discussed in a Delphi survey/consensus meeting with the OCDCORE EP and the final list of instruments to be included in the COS determined.