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Word count
Abstract: 241 words
Main text: 4 603 words
Tables: 3
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Prevention of obsessive-compulsive disorder in at-risk children: A feasibility trial
Kristina Aspvall, PhD1; Martin Kraepelien, PhD1; Julia Petersson2; Johanna Nilsson2;
Matti Cervin, PhD3; Johan Åhlén, PhD4,5; Erik Andersson, PhD2; David Mataix-Cols, PhD1,3
1 Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, Stockholm, Sweden
2 Division of Psychology, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
3 Child and Adolescent Psychiatry, Department of Clinical Sciences, Lund, Lund University, Lund, Sweden
4 Centre for Epidemiology and Community Medicine, Stockholm County Council, Stockholm, Sweden
5 Department of Global Public Health, Karolinska Institutet, Stockholm, Sweden
Correspondence
Kristina Aspvall, Child and Adolescent Psychiatry Research Centre, Gävlegatan 22, plan 8, 113 30 Stockholm, Sweden. kristina.aspvall@ki.se
ORCID: Aspvall 0000-0002-2973-6949
ABSTRACT
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Preventing obsessive-compulsive disorder (OCD) has long been considered a central, yet elusive, goal for the field of OCD. Achieving this will likely require identifying individuals at elevated risk and intervening during critical developmental periods before the onset of impairing symptoms. This trial evaluated the feasibility of a brief parent-guided online targeted prevention program for children at-risk of developing OCD. We enrolled 35 children aged 5–12 years with a first-degree relative with OCD and/or subclinical obsessive-compulsive symptoms. None met diagnostic criteria for OCD at baseline. The four-week intervention targeted known maintaining factors (compulsions, family accommodation and avoidance) and was delivered online without scheduled therapist contact. The outcomes included feasibility and acceptability measures, along with preliminary efficacy in reducing the targeted maintaining factors. Assessments were conducted at baseline, after the intervention, and at 6- and 12-month follow-ups. All families initiated the program, and 66% completed at least three of the four modules during the study period. Parents reported high credibility and satisfaction with the intervention. At the 12-month follow-up, 33 parents completed the assessment and statistically significant within-group improvements were observed for compulsions (d = 0.66, 95% CI 0.31–1.00), family accommodation (d = 0.75, 95% CI 0.43–1.07), and avoidance (d = 0.56, 95% CI 0.12 to 1.00). One child met diagnostic criteria for OCD at the 12-month follow-up. This study supports the feasibility and acceptability of a brief prevention program for children at-risk of developing OCD. A randomized controlled trial of this novel program is warranted.
Keywords:
prevention
obsessive-compulsive disorder
child
cognitive behavioral therapy
parent-support
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INTRODUCTION
Obsessive-compulsive disorder (OCD) is a debilitating psychiatric condition marked by intrusive, unwanted thoughts, urges, or images and repetitive behaviours or mental acts which are time consuming and/or impairing. Typically emerging during childhood (Taylor, 2011), and affecting 1–3% of children and adolescents (Cervin, 2023) with a peak age of onset around 14.5 years (Solmi et al., 2022), OCD exerts a profound toll on long-term functioning, health, and quality of life. For example, the disorder is associated with school absenteeism (Fernández de la Cruz et al., 2025) and marked disruption in academic performance (Pérez-Vigil, Fernandez de la Cruz, et al., 2018). These impacts can extend well into adulthood; individuals with OCD have an increased risk of labor market exclusion (Pérez-Vigil, Mittendorfer-Rutz, et al., 2018), autoimmune disorders (Mataix-Cols et al., 2018), cardiovascular diseases (Isomura et al., 2018), suicide (Fernandez de la Cruz et al., 2016), and death due to natural causes (Fernández de la Cruz et al., 2024; Meier et al., 2016). Thus, OCD could be regarded as a public health concern.
Cognitive behavioral therapy (CBT) and serotonin reuptake inhibitors are both effective treatments for OCD (Cervin et al., 2024; Öst et al., 2015). However, current treatment strategies have limitations. First, most individuals with OCD do not access evidence-based care until several years after symptom onset (Costa et al., 2022; Hollander et al., 1998; Micali et al., 2010; Ziegler et al., 2021). This delay is particularly problematic, given that early intervention is associated with better outcomes (Stewart et al., 2004; Zheng et al., 2021). Even when treatment is available, CBT requires substantial expertise, time and resources, which are seldom available (Foa et al., 2012; March & Mulle, 1998). Additionally, a significant number of patients do not wish or are unable to engage in therapy, receive suboptimal or even harmful treatment, and/or drop out prematurely (Leeuwerik et al., 2019; Mancebo et al., 2011; Reid et al., 2018; Trent et al., 2025). Pharmacological approaches, while efficacious, can have undesirable side effects and their benefits tend to wear off after discontinuation (Batelaan et al., 2017; Pittenger & Bloch, 2014).
Preventing OCD has long been considered a central, yet elusive, goal for the field (Brakoulias et al., 2018; Fineberg et al., 2019; Fontenelle et al., 2022). Achieving this will likely require identifying individuals at elevated risk, understanding risk and maintaining factors, intervening during critical developmental periods (before the onset of impairing symptoms), and the use of scalable approaches (Mataix-Cols et al., In press). We have developed a brief, parent-guided online program designed to prevent OCD in children at risk, defined as children aged up to 12 years with a first degree relative with a lifetime diagnosis of OCD and/or ongoing subclinical OCD symptoms. This targeted approach was based on previous studies which have shown that a) OCD is a familial and heritable disorder, with first-degree relatives having a five-fold risk of developing OCD (Browne et al., 2015; Mataix-Cols et al., 2013), and b) that young people with subclinical obsessive-compulsive symptoms have a nearly 6-fold increased risk of developing full-blown OCD in adulthood (Fullana et al., 2009).
The program is based on CBT principles and directly targets maintaining factors that are thought to perpetuate the OCD cycle, namely avoidance, compulsions, and family accommodation (March & Mulle, 1998). As the program targets both children with and without current subclinical symptoms, it straddles the line between selective prevention (reducing risk before symptoms appear) and indicated prevention (early identification and intervention to halt progression).
The primary aim of the study was to examine the feasibility and acceptability of the prevention program. Secondary objectives included assessing changes in parental knowledge and skills, as well as in the targeted maintaining factors, namely children’s compulsive behaviors, avoidance, and family accommodation. A qualitative evaluation of parental experiences will be reported separately.
METHODS
Trial design
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In this single-group open trial, assessments were conducted at baseline, end-of-program, and at six- and twelve-month follow-ups. The study was approved by the Swedish Ethical Review Authority (Dnr 2023-01567-01, Amended 2023-07851-02), and the study protocol was pre-registered at Open Science Framework (https://osf.io/vp6c3/). Initially, the inclusion criteria were set to having both a) a first-degree relative with a life-time history of OCD and b) experiencing current subclinical obsessive-compulsive symptoms. The inclusion criteria were changed after four months when only one participant had been recruited, in order to expand the range of eligible ages and soften the requirement of both family history and subclinical symptoms. This change was reflected in a revised version of the study protocol (https://osf.io/vp6c3/). No additional modifications to the protocol were done after this change.
All participants and their parents/legal guardians received verbal and written information about the study.
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The parents provided digital informed consent and the children verbal assent before inclusion.
Patient and Public Involvement
During the development of the program, two interview sessions were conducted with two parents of children with OCD recruited from the specialist OCD and related disorders clinic for young people in Stockholm, and three representatives from the Swedish OCD association. The participants contributed to both the trial design and program content. Their feedback informed language refinements and improved the relevance and clarity of the program materials.
Participants
Eligible participants were children aged between 5 and 12 years, who fulfilled at least one of the following criteria: a) having at least one first-degree relative (i.e., biological parent or full sibling/twin) with a lifetime history of OCD and/or b) experiencing current subclinical obsessive-compulsive symptoms. Subclinical symptoms were operationalized as a score between 10 and 21 on the parent-rated Children Obsessive-Compulsive Inventory-Revised-Parent version (ChOCI-R-P). A ChOCI-R-P score of 10 approximately corresponds to a score of 5 on the clinician-rated Children’s Yale-Brown Obsessive-Compulsive (CY-BOCS; Uher et al., 2008), and a ChOCI-R-P score of 21 approximately corresponds to 13 points on the CY-BOCS (Uher et al., 2008), which in turn is the border between clinical and sub-clinical OCD (Cervin, OCD Severity Benchmark Consortium, et al., 2022). Additional inclusion criteria were residence in Sweden, parent(s) able to speak and read Swedish, and daily access to a computer or other device with internet connection.
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Participants were excluded if parent(s) suffered from current or recent alcohol or substance abuse; parent(s) suffered from a current psychosis, ongoing mania or hypomania, severe depression or increased suicide risk; the family had any ongoing circumstances that could interfere with the intervention (e.g., custody dispute, violence, investigation through social services, or assessment for a neurodevelopmental disorder); the child was in need of treatment for a mental health condition; or the child was currently receiving, or had previously received, treatment for OCD.
The absence or presence of an OCD diagnosis was established with the Structured Clinical Interview (SCID) for DSM-IV, adapted by our research team to align with the DSM-5 criteria for OCD. Other mental disorders were assessed using the Mini International Neuropsychiatric Interview (MINI) for the parents (Sheehan et al., 1998), and the MINI-KID for the children (Sheehan et al., 2010).
Procedure
The study was advertised amongst members of the Swedish OCD association, specialist OCD clinics for adults and children in Stockholm and Gothenburg (Sweden), and via social media platforms, with a link to the study webpage.
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Interested parents could self-refer through a secure website specifically created for the trial, where they first read information about the study and data protection legislation before providing digital consent to participate.
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Consenting parents were then instructed to complete an online screening battery with questions about sociodemographic information, inclusion and exclusion criteria, and the ChOCI-R-P.
An initial telephone interview was conducted with the parent when the initial screening was complete to verify the information from the application and answer any questions about the study. The interviews were conducted by the first author, a licensed clinical psychologist with extensive experience assessing and treating OCD, and two trained psychology students under close supervision. Non-eligible families were notified that they could not participate, including the reason for exclusion, and had a possibility to ask further questions. Eligible families were invited to an inclusion assessment conducted via video conferencing where the first author met the child together with the parent. The aim of this assessment was to give information, answer questions and collect verbal assent for participation from the child, as well as to verify that the child did not meet diagnostic criteria for OCD or needed treatment for any other psychiatric disorder. The assessment also aimed to introduce the families to the program and enhance adherence (Mohr et al., 2011). Before the inclusion assessment, the parents were instructed to log in to the online platform again to complete the baseline questionnaires.
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The families were included in the trial when the parent/s had provided informed consent, the child had provided verbal assent, and the baseline assessment was complete.
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Both parents were offered access to the program, and other significant adults were encouraged to read the material.
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Parents started to work with the program within one to two weeks after the inclusion assessment.
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During the second week, parents were asked questions regarding intervention credibility. After four weeks, the end-of-program assessment was activated, and parents received automatic reminders to complete the assessment and study personnel called the parents for reminders when needed. Follow-up assessments were conducted six and 12 months after the end of the program. These assessments included parent-rated measures and a phone call to assess if the child met the diagnostic criteria for OCD and needed additional help.
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The phone call also aimed to motivate parents to continue using the learned strategies. To further boost the use of the program, the parents received automatic SMS reminders one, two, four, eight and ten months after the program had ended.
Intervention
The program is based on classic CBT principles, which stipulate that negative reinforcement is a key factor in the onset and maintenance of OCD (Mowrer, 1939). When avoiding a feared stimuli or performing a compulsion, the distress associated with the obsession is temporarily reduced, which makes the individual more prone to act the same way in the future. Another behaviour that has the same function as avoidance and compulsions is known as family accommodation, which is the involvement of family members in the patient’s symptoms to reduce their loved ones’ anxiety, anger or other emotions related to the disorder (Lebowitz et al., 2016). Our program targets these key maintaining factors (i.e., avoidance, compulsions and family accommodation) through exposure and response prevention exercises.
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The parent-guided program consists of four modules that are delivered online over four weeks (Table 1, Fig. 2). The modules include psychoeducation about OCD, with a particular emphasis on early risk and maintaining factors relevant for prevention, and core CBT strategies (exposure, response prevention and reduction of family accommodation). Early on, the parent is encouraged to conduct practical exercises together with the child, for example help the child face anxiety providing situations, and reduce avoidance, compulsions and family accommodation, if present. The last module involves a plan for the future. The intervention also includes brief information about parenting skills, with the aim of facilitating the use of CBT strategies (e.g., talking to your child about the symptoms, reducing coercive parenting, express confidence towards the child, and encourage the child’s autonomy).
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Information about what to do if the child develops OCD is provided (e.g., guidance to reach the closest Child and Adolescent Mental Health Service).
Table 1
Overview of the parent-supported online program
Module
Content
Detailed description
1
About OCD, the program “Parent support” and the tool “exposure”
About the prevention program. When and how to seek additional help if needed.
Psychoeducation about OCD (e.g., symptoms, family risk, emotional reactions, maintaining model). The vicious OCD cycle, including examples with avoidance behaviours and family accommodation.
Psychoeducation about the program (e.g., CBT skills, reducing avoidance behaviours, compulsions and family accommodation), including examples on how to talk to your child about obsessive-compulsive symptoms and the CBT skills.
Information about the tool “Exposure”.
Use the tool “Exposure”: select which situations are relevant for the family to work with, select which exercise to perform during the week (i.e., exposure, response prevention, and/or reducing family accommodation), conduct the exercise and evaluate afterwards.
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Avoidance behaviours and compulsions, parental skills
A special focus on avoidance and compulsions, including examples, rationale for the CBT skills, and how the parent can help the child to approach anxiety provoking situations and to reduce compulsions.
Information about parental skills to facilitate the use of CBT skills.
Use the tool “Exposure”: continue to conduct exercises in the selected situations from module 1 or add new situations and exercises that target avoidance and compulsions.
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Family accommodation
A special focus on family accommodation, including examples, rationale for the CBT skills, and how the parent can deal with common emotional reactions, e.g. anger outbursts, when reducing family accommodation.
Use the tool “Exposure”: continue to conduct exercises in the selected situations from module 1 and 2 or add new situations and exercises that target family accommodation.
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Plan for the future
Summarize the skills learned during the program and plan for continued work during the next four weeks.
Use the tool “Exposure”: continue to conduct exercises in the selected situations from module 1–3.
Thank you for your participation!
Abbreviations: CBT, cognitive behaviour therapy; OCD, obsessive-compulsive disorder
The parents work with the program on their own without any scheduled therapist contact but can communicate with the study personnel through a built-in chat function in the online platform to receive feedback on demand if questions arise. The program uses a digital interface, which was constructed to be simple and intuitive to use, and is both smartphone-friendly and accessible via a desktop computer (Hentati et al., 2021).
Measures
Feasibility and acceptability
Feasibility was assessed by the ease of recruitment, number of started and completed modules, and need of additional support. Module completion was defined as accessing the whole module’s content, and a completion of three modules was considered sufficient to indicate feasibility. Acceptability was assessed through adapted versions of the Treatment credibility and expectancy questionnaire (Borkovec & Nau, 1972) at week 2 and the Client Satisfaction Questionnaire – 8 item version, without the item about therapist support at the end of the program (CSQ-7; Attkisson & Zwick, 1982). To report the proportion of participating parents who perceived the program as credible and who were satisfied with the program, we used a cutoff on the two scales, similar to what has been reported elsewhere (Smith et al., 2014). A score of 31 or higher (total score ranging from 0 to 50) on the Treatment Credibility and Expectancy Questionnaire was considered indicative of credibility, and a score of 18 points or higher (total score ranging from 7 to 28) on the CSQ-7 was considered to reflect satisfaction with the program. The internal consistency was α = 0.90 for the credibility items and α = 0.90 for the CSQ-7.
Outcome measures
Compulsions were measured with the parent-rated ChOCI-R-P (Uher et al., 2008), which includes six items on compulsions. The items are rated from 0 to 4, yielding a score of 0–24, with higher scores indicating greater severity. For the purpose of the current trial, we used a one-week time frame for the ChOCI-R-P. Family accommodation was assessed with the Family Accommodation Scale – Self-rated (FAS-SR; Pinto et al., 2013). To assess parent-rated avoidance in the child, the research team adapted the avoidance item of the Children’s Yale-Brown Obsessive-Compulsive Scale (see eMethod). Parents rated the item from 0 = “not at all” to 8 = “extreme avoidance”.
Additional measures included the total score and the obsessions subscale of the ChOCI-R-P, the Work and Social Adjustment Scale – Parent version (WSAS-P; Jassi et al., 2020) to assess functional impairment due to obsessive-compulsive symptoms, and the Revised Children’s Anxiety and Depression Scale – Parent version (RCADS-P; Cervin, Veas, et al., 2022) to assess anxiety and depressive symptoms. The internal consistency in this study were: FAS-SR α = 0.76, ChOCI-R-P α = 0.80, WSAS-P α = 0.58, and RCADS-P α = 0.83.
The research team also developed three questions to assess parents’ sense of self-efficacy in how to help their child (“How confident do you feel in supporting your child to prevent the development of OCD?”, rated from 0 = “not at all” to 8 = “extremely confident”), family conflict due to obsessive-compulsive symptoms (”How often do you argue or fight in your family due to your child’s obsessive-compulsive symptoms?”, rated from 0 = “never” to 8 = “all the time”), and rage attacks due to obsessive-compulsive symptoms (”How often does your child get angry or has tantrums when people do not accommodate to his/her obsessive-compulsive symptoms?”, rated from 0 = ”never” to 8 = “all the time”).
Other measures
A knowledge test including 5 multiple-choice items about cases portraying children and their parents were used to assess knowledge about OCD and applied knowledge about managing OCD symptoms before and after the program (see eMethod). The items were developed by the research team to reflect the content of the online program. There were two versions of the test, where half of the participants completed version 1 at baseline and version 2 at post-intervention, and the other half of the participants the opposite. The total score ranged from 0 to 10 points, and a score of 8 was considered to indicate good knowledge (corresponding to four out of five correct answers).
The research team also developed three questions to assess how much the parents used the strategies presented in the program.
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The parents were asked to rate how often they help their child to approach avoided things or situations, reduce or stop compulsions and resist to accommodate to the child’s demands. Each item was rated from 0 = “never” to 8 = “very often”, yielding a total score of 0–24.
Another measure was the child’s need of treatment during the follow-up period, which was assessed by recording if a child’s symptoms deteriorated to a point that referral to appropriate services was needed.
Sample size
Because the primary aim of this study was to assess the feasibility of the program, we did not power the study to find a specific effect size. Instead, we aimed to get preliminary estimates of the within-group effects, which in turn will inform power analysis in a subsequent controlled trial. We aimed to recruit a minimum of 30 families, which we anticipated would be sufficient to evaluate feasibility and acceptability.
Statistical methods
Data on feasibility and acceptability were analyzed using descriptive statistics. Data from the knowledge test were analyzed using paired-sample t-tests and McNemar’s test. To evaluate if the program was associated with reductions in the targeted maintaining factors, we first estimated within-group effect sizes (including 95% confidence intervals) using a mixed-effects regression framework. For this analysis, we used the m_effectsize command in Stata (“net install m_effectsize, from (http://www.imm.ki.se/biostatistics/stata) replace”). This command estimates effect sizes by dividing the estimated change score in the mixed-effects regression analysis by the pooled standard deviation at baseline, and 1000 bootstrap replications were used to construct the confidence interval. Finally, we correlated the self-reported parental use of preventive strategies during the study period with change scores on the compulsions, avoidance and family accommodation scales.
RESULTS
Sample characteristics and study flow
Out of the 82 families that were assessed for eligibility, 35 were included between September 15, 2023, and March 21, 2024 (Fig. 1). The majority of participating parents had a high level of education (Table 2) and learnt about the study from social media (n = 23, 65.7%), four (11.4%) from the Swedish OCD-association, three (8.6%) from an OCD clinic for children, one (2.9%) from an OCD clinic for adults, and four (11.4%) from other sources (e.g., friend or relative, search on the internet, podcast).
Fig. 1
Study flow
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The mean age of the included children was 7.9 years (SD = 2.0; Table 2). More than half (n = 17, 58.6%) had both a first-degree relative with a history of OCD and subclinical OCD symptoms, 12 (34.3%) only had subclinical symptoms, and six (17.1%) only had a first-degree relative with OCD.
Figure 1 shows the study flow. No participants dropped out from the study. All parents (N = 35, 100%) completed the end-of-program assessment and 91.4% (n = 33) completed the 12-month follow-up assessment conducted over the telephone.
Feasibility and acceptability
All parents initiated at least one module, and 48.6% (n = 17) had completed at least three modules the end of the active phase of the study (eFigure 1). This proportion increased to 65.7% (n = 23) during the follow-up period.
The total time spent by study personnel on each participating family was on average 90.2 minutes (SD = 32.2; range 33–178), which included all the assessments before and after treatment as well as any support time during the study period (eTable 1).
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Seven parents (20%) initiated contact with the study personnel during the study period, which corresponds to an average support time of 9.1 minutes per parent (SD = 8.0; range 1–21).
Regarding credibility, the average score was 37.8 (SD = 8.9, data available for 33 participants) and 81.8% (n = 27) rated the program as credible based on the cutoff of 31 points. On the question “How logical do you think this program is?”, parents scored on average 8.3 (SD = 1.7; range 5–10; eTable 2). After the program, the average score was 23.5 (SD = 3.4) on CSQ-7 and 94.3% (n = 33) of the parents were satisfied or very satisfied with the program. All except for two parents answered either “Yes, absolutely” (n = 21, 60.0%) or “Yes, I think so” (n = 12; 33.4%) on the item “If a friend would be in need of similar help, would you recommend our program to her or him?” and on the question “In total, how satisfied are you with the program you have received?” 16 parents (45.7%) answered “Very satisfied” and 17 (48.6%) “Pretty satisfied” (eTable 3).
Knowledge test
At baseline, the mean knowledge test score was 7.6 points (SD = 1.8, range 2–10), and at the end-of-program it was M = 8.3 points (SD = 1.7, range 3–10), a non-significant difference, t (34) = 1.55, p = .129. At baseline 54.3% (n = 19) parents scored 8 points or above, and at the end-of-program it had increased to 68.6% (n = 24), also a non-significant difference χ(1) = 1.47, p = .225.
Targeted maintaining factors
The changes in the targeted maintaining factors and corresponding effect sizes are presented in Table 3. Significant within-group differences were observed on the three targeted maintaining factors compulsions, family accommodation, and avoidance. We also observed large reductions in parent-rated global OCD symptom severity (Fig. 3), corresponding to a within-group effect size of d = 0.82 (95% CI 0.46 to 1.18).
Table 3
Clinical outcome measures (N = 35)
Table 2. Sociodemographic and clinical characteristics of the sample (N = 35)
Characteristic
No. (%)
Gender
 
Female
18 (51.4)
Male
17 (48.6)
Age years, mean (SD) [range]
7.9 (2.0), 5–12
Living arrangement
 
Lives with both parents
32 (91.4)
Alternating residence
1 (2.7)
Lives with one parent
2 (5.7)
Siblings
 
No siblings
5 (14.3)
One sibling
17 (48.6)
Two siblings
11 (31.4)
Three siblings
2 (5.7)
First-degree relative with OCD
 
No
12 (34.3)
Yes
23 (65.7)
Mother
14 (40.0)
Father
2 (5.7)
Sibling
8 (22.9)
Current OCD symptoms child
 
No
6 (17.1)
Yes
29 (82.9)
ChOCI-R-P score, mean (SD)a
16.5 (2.9)
Symptom onset years, mean (SD)
5.7 (1.4)
Comorbidity
 
None
26 (74.3)
Anxiety disorder
6 (17.1)
Tics disorder
4 (8.6)
Autism spectrum disorder
2 (5.7)
Main parent working with the program
 
Mother
32 (91.4)
Father
3 (8.6)
Main parent education level
 
Secondary school
0 = primary school
1 = secondary school
2 = post-secondary school
3 = college/university < 3y
4 = college/university > 2y
5 = doctorate
2 (5.7)
Further education, not university
2 (5.7)
College/university < 3y
2 (5.7)
College/university ≥3y
27 (77.1)
Doctorate
2 (5.7)
Main parent occupational status parent
 
Working full-time
22 (62.9)
Working part-time
6 (17.1)
Student
4 (11.4)
Sick leave
2 (5.7)
Unemployed
1 (2.9)
a Symptom severity for the children who had a total ChOCI-R-P score of 10–21 points at baseline
Abbreviations: ChOCI-R-P, OCD
 
Observed values
Within group x time interaction effect *
Effect size
Outcome
Mean (SD)
Z
p-value
Bootstrapped d (95% CI)
Compulsions subscale
    
Baseline
7.6 (3.7)
   
End-of-program
5.4 (3.6)
   
6-month follow-up
4.3 (4.1)
   
12-month follow-up
4.3 (4.4)
-3.75
< 0.001
0.66 (0.31 to 1.00)
FAS-SR
    
Baseline
10.1 (7.6)
   
End-of-program
4.1 (4.3)
   
6-month follow-up
3.0 (4.0)
   
12-month follow-up
3.9 (4.3)
-4.61
< 0.001
0.75 (0.43 to 1.07)
Avoidance
    
Baseline
1.5 (1.5)
   
End-of-program
1.1 (1.1)
   
6-month follow-up
0.6 (1.0)
   
12-month follow-up
0.8 (1.1)
-2.47
< 0.05
0.56 (0.12 to 1.00)
ChOCI-R-P total
    
Baseline
14.1 (6.1)
   
End-of-program
9.7 (6.2)
   
6-month follow-up
7.5 (6.8)
   
12-month follow-up
7.4 (6.6)
-5.10
< 0.001
0.82 (0.46 to 1.18)
Obsessions subscale
    
Baseline
5.6 (3.7)
   
End-of-program
3.9 (3.6)
   
6-month follow-up
2.8 (3.6)
   
12-month follow-up
2.7 (4.1)
-3.00
< 0.01
0.66 (0.23 to 1.08)
WSAS-P
    
Baseline
4.5 (4.0)
   
End-of-program
3.8 (4.0)
   
6-month follow-up
3.0 (3.9)
   
12-month follow-up
3.7 (4.3)
-1.08
0.282
0.20 (-0.16 to 0.56)
RCADS-P total score
    
Baseline
19.9 (8.4)
   
End-of-program
16.5 (8.7)
   
6-month follow-up
14.3 (8.9)
   
12-month follow-up
14.7 (8.5)
-3.97
< 0.001
0.49 (0.25 to 0.74)
Family conflicts
    
Baseline
2.2 (2.0)
   
End-of-program
1.5 (1.7)
   
6-month follow-up
1.0 (1.4)
   
12-month follow-up
1.0 (1.7)
-3.68
< 0.001
0.61 (0.28 to 0.93)
Anger outbursts
    
Baseline
2.3 (2.4)
   
End-of-program
1.8 (1.8)
   
6-month follow-up
1.3 (1.9)
   
12-month follow-up
1.0 (1.7)
-2.44
< 0.05
0.35 (0.07 to 0.62)
Parent self-efficacy
    
Baseline
3.6 (2.5)
   
End-of-program
4.5 (2.1)
   
6-month follow-up
4.5 (2.6)
   
12-month follow-up
5.0 (2.3)
2.21
< 0.05
0.36 (0.04 to 0.67)
Abbreviations: ChOCI-R-P, Children’s Obsessive-Compulsive Inventory-Revised-Parent version; FAS-SR, Family Accommodation Scale – Self Rated; RCADS-P, Revised Children’s Anxiety and Depression Scale – Parent rated; WSAS-P, Work Social Adjustment Scale – Parent rated
*From baseline to 12-month follow-up
Fig. 3
Parent-rated OCD symptoms over the 12-month follow-up period
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Other outcomes
Statistically significant improvements were also seen on measures of anxiety/depression (RCADS-P), family conflict, anger outbursts, and parental self-efficacy (Table 3).
Use of parental strategies
There were a statistically significant association between how much the parents reported that they used the strategies learned through the program and change in avoidance at the end-of-program assessment, but not in the other two hypothesized maintaining factors: avoidance r(33) = 0.40, p < .05; compulsions r(33) = 0.11, p = .53; and family accommodation r(33) = 0.24, p = .16.
Need for treatment during the follow-up and incident OCD diagnoses
During the follow-up period, three participants received additional support for obsessive-compulsive symptoms, which were initiated by the parents without contact with study personnel.
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One received continued parental support as part of a group intervention for OCD within child- and adolescent psychiatry, and two had individual contacts in primary care, each consisting of five sessions of CBT. Our clinical evaluation indicated that only one of these children met criteria for OCD at the 12-month follow-up. Two additional participants showed symptom levels on ChOCI-R-P above the predefined inclusion threshold, but did not meet diagnostic criteria due to minimal impairment, and were therefore not diagnosed or referred for further care.
DISCUSSION
This study represents the first evaluation of a targeted prevention program specifically designed for children at risk of developing OCD.
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Most parents completed three or four modules (of the four modules), continued using the materials during follow-up, and reported high satisfaction. Significant improvements were observed in the three targeted maintaining factors and overall symptom severity, suggesting a behavioral change despite the low baseline scores typically seen in prevention trials. Additional improvements were seen on other measures including child anxiety/depression, family conflict, anger outbursts, and parental self-efficacy. These findings suggest that a low-intensity digital program is both feasible and acceptable for families of children with early signs of OCD (indicated prevention) or family history of OCD (selective prevention). One child met diagnostic criteria for OCD at the 12-month follow-up.
Initially, recruitment was slow, which led to revisions in the inclusion criteria and advertisement strategies. The original focus on children with both subclinical symptoms and a family history of OCD was broadened to include children with either risk factor, and the eligible age range was expanded to 5–12 years. Most participants were around eight years old, and 66% had a first-degree relative with OCD.
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Many parents engaged with most of the program content, and several continued to use the material throughout the follow-up period, indicating sustained application of the intervention strategies.
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However, some parents discontinued their engagement after the first couple of modules. The reasons for this are not clear but may include a perceived mismatch between content and the child’s symptom level, difficulties related to program length, therapist support, or the overall structure. In some cases, the timing of the intervention may have been suboptimal in relation to family circumstances.
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It is also possible that some parents quickly grasped the program’s core principles and were able to implement the strategies independently without requiring further input. Ongoing qualitative analyses of parent interviews will explore these factors in greater depth.
Although the program aimed to increase parental knowledge about OCD, we observed few changes on the knowledge questionnaire.
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The likely reason for this was that many parents were already very familiar with OCD at baseline, resulting in small room for improvement. An alternative explanation is that the knowledge items lacked sufficient sensitivity or psychometric properties to detect change over time. It is also plausible that the program focused more on the application of existing knowledge, by encouraging parents to implement what they had learned through various exercises. This may be more relevant and important than merely increasing knowledge. The observed improvements in the maintaining factors suggest that parents did change their behaviours, and that the program was associated with reductions in children’s symptoms. This highlights the importance of targeting parental behavior directly, rather than focusing solely on psychoeducation.
The effect sizes in this current study were smaller than those typically seen in OCD treatment trials (Cervin et al., 2024; Chessell et al., 2024), which is expected given the low initial symptom severity. The program is designed as an indicated prevention or early intervention tool. It aligns with a clinical staging model in which brief, scalable interventions are offered at early stages of symptom development, with the aim of preventing progression to more severe and impairing symptoms, and potentially reducing future clinical burden (Fineberg et al., 2019). A key consideration for future studies will be to determine whether a selective or indicated prevention approach, or a combination of both, is most appropriate.
Three families sought additional support for obsessive-compulsive symptoms during follow-up, which might be related to the engagement with the program. One of these children met diagnostic criteria for OCD one year after the program. While this study lacked a control group, the results are encouraging and suggest that the hypothesized maintaining factors are modifiable before disorder onset. Much larger trials with long follow-up periods will be required to determine if such preventive efforts can reduce the incidence of full-threshold OCD.
In line with one of the most recent prevention trials for childhood anxiety (Dunn et al., 2024), the parent-guided digital format, combined with brief structured assessments, represents a cost-effective and scalable strategy that could be integrated into community or school settings. Although the program in the current study was parent-guided, with no scheduled clinician support, the structured assessments were conducted with parents before and after the program, corresponding to approximately 90 minutes per family in total. This is an important consideration when evaluating the scalability, as compliance may decrease without this additional support (Mohr et al., 2011).
This study has several limitations. First, the trial did not include a control condition and the assessors were not blinded to the intervention, which limits the conclusions about the effects of the program. Second, the follow-up period was limited to one year, which is insufficient to assess the long-term effects of the program. Third, the participating families were self-referred, with well-educated and likely highly motivated parents. This limits the generalizability to a broader population, although this group may be the most likely to engage with such a program. Lastly, several of the outcomes were developed by the research team and have not undergone psychometric evaluation, although they have strong face validity. These limitations should be considered when interpreting the findings and planning future research.
In conclusion, this study provides preliminary support for the feasibility, acceptability, and potential efficacy of an online, parent-guided targeted prevention program for children at risk of OCD. If replicated in larger, controlled trials, this approach could help shift the field toward earlier identification and low-intensity preventive strategies, ultimately reducing the burden of OCD before it fully develops. The findings open new avenues for scalable mental health prevention efforts and contribute to a growing movement toward proactive rather than reactive care in child and adolescent psychiatry.
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Acknowledgement
We wish to express our gratitude to Helena Rönnberg, Elin Olaisson and Frida Knutsson at the Swedish OCD association, and the two parents who participated in the interview sessions and provided valuable feedback on the program.
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Funding
The study was funded by Karolinska Institutet, Fonden för psykisk hälsa and Magnus Bergvall stiftelse. Dr Aspvall was supported by Forte (grant number 2022 − 00831) and Region Stockholm.
Data sharing statement
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The dataset is not publicly available due to Swedish and EU legislation, but can be made available upon reasonable request on a case by case basis, according to the current legislation and ethical permits.
Declaration of interests
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Dr. Aspvall, member of the editorial board of Child Psychiatry and Human Development and Dr. Cervin, Associate Editor of Child Psychiatry and Human Development, are authors of this article. Editorial board members including Dr. Aspvall and Dr. Cervin are not involved in decisions about papers which they have written themselves or have been written by family members or which relate to products or services in which the editor has an interest. Any such submission is subject to all of the journal’s usual procedures, with peer review handled independently of the relevant editor and their research groups. Dr Mataix-Cols receives royalties for contributing articles to UpToDate, Wolters Kluwer Health, and is part owner of Scandinavian E-Health AB, all outside the submitted work.
Electronic Supplementary Material
Below is the link to the electronic supplementary material
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Author Contribution
KA, MK, MC, JÅ, EA and DMC contributed to the study design. KA, JP and JN contributed to acquisition of data. KA conducted the statistical analysis and drafted the manuscript. All authors reviewed the manuscript for intellectual content and approved the final version of the manuscript.
Declarations
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Competing Interests
Dr. Aspvall, member of the editorial board of Child Psychiatry and Human Development and Dr. Cervin, Associate Editor of Child Psychiatry and Human Development, are authors of this article. Editorial board members including Dr. Aspvall and Dr. Cervin are not involved in decisions about papers which they have written themselves or have been written by family members or which relate to products or services in which the editor has an interest. Any such submission is subject to all of the journal’s usual procedures, with peer review handled independently of the relevant editor and their research groups. Dr Mataix-Cols receives royalties for contributing articles to UpToDate, Wolters Kluwer Health, and is part owner of Scandinavian E-Health AB, all outside the submitted work.
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Data Availability
The dataset is not publicly available due to Swedish and EU legislation, but can be made available upon reasonable request on a case by case basis, according to the current legislation and ethical permits.
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TABLES
Note
ChOCI-R-P, Children’s Obsessive-Compulsive Inventory-Revised-Parent rated; OCD, Obsessive-compulsive disorder
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Note
From left to right: home menu, case examples, common questions & answers, and the messaging function.
Note
ChOCI-R-P, Children’s Obsessive-Compulsive Inventory-Revised-Parent rated; OCD, Obsessive-compulsive disorder; 6FU, 6-month follow-up; 12FU, 12-month follow-up
Prevention of obsessive-compulsive disorder in at-risk children: A feasibility trial
Total words in MS: 5979
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