Tag: Academic research

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The Most Effective OCD Treatment Reaches Almost No One: Here’s What We Can Do About It

– Rebecca Deusser, MS, MBA and Sanjaya Saxena, MD

“It took me years to find out that what I was dealing with was OCD!”

This is a phrase all too often repeated by people living with obsessive compulsive disorder. Currently, individuals live with OCD for an average of 7 years (Dell’Osso et al, 2019) before they even receive a diagnosis, all while symptoms may intensify and daily life often becomes increasingly constrained. 

Clinicians, researchers, and advocates have long raised this concern. What has been missing is clear data behind how many people with OCD in the U.S. are missed in clinical settings or are not receiving the most effective treatment.

When the International OCD Foundation undertook this analysis, the scale of the problem became unmistakable. Millions of people in America are currently struggling with OCD without the most effective treatment.

The challenges we detail in our new white paper, America’s OCD Care Crisis: National Findings on the Failure of Effective OCD Treatment to Reach Patients, are significant, but fixable. They are symptoms of structural oversights that can be changed. Effective, evidence-based treatment for OCD exists, and through intentional action, we can dramatically change these unacceptable outcomes for people with OCD.

Where People With OCD Fall Through the Cracks

Well established prevalence rates for OCD indicate that nearly 10 million people in America — roughly 3% (Ruscio et al, 2010; Stein et al,2025; Ringeisen et al, 2025) — will have OCD at some point in their lives. Yet our findings suggest that 75% of them are never even identified, and up to 95% aren’t receiving the most effective treatment for the disorder.

In our analysis, we discovered significant systemic breakdowns at several key points of a patient’s journey: screening, diagnosis, referral, and treatment.

  • Screening and Diagnosis: Receiving a clinical diagnosis is an important step toward recovery as it promotes understanding and opens paths to effective treatment. Yet our findings suggest that this crucial initial step is missing for many millions of people. Of the 10.4 million patient records reviewed in our analysis, only 0.51% received a formal OCD diagnosis, far below the 3% expected prevalence rate. 
  • Referral to appropriate care: After a diagnosis is obtained, a handoff to appropriate care is needed to keep the patient from falling out of the treatment pathway. Here, too, we found an alarming gap within our sample: more than 72% of patients identified as having OCD did not receive a referral for cognitive-behavioral therapy (CBT), the most effective treatment for OCD.
  • Effective Treatment: Decades of research has established Exposure and Response Prevention (ERP) therapy, a specific form of CBT, as the most effective, first-line therapy for OCD. Yet, an astounding 95-98% of people with OCD had not received ERP treatment. Even when people seek help — and even when they are diagnosed — the vast majority never reach the treatment most likely to help them recover.

What We Can Do About It

The breakdowns seen in each step of the care pathway reinforce the focus of IOCDF’s Vision 2030, our five-year strategy to address the systemic barriers that keep effective OCD treatment out of reach.

While the findings are stark, they illuminate many opportunities for change:

  • Identify symptoms earlier by implementing routine OCD screening in primary healthcare and mental health settings.
  • Support clinicians in better understanding and treating OCD by expanding training in assessment, diagnosis, and evidence-based treatment modalities.
  • Help people receive care that works by strengthening adherence to existing professional treatment guidelines.
  • Increase the number of people with OCD who receive effective treatment  by supporting affordable access to ERP and other evidence-based therapies.
  • Let people know they’re not alone by raising accurate public awareness of what OCD really is — and that it is treatable.

Vision 2030 outlines how the IOCDF is committing its resources, partnerships, and expertise toward advancing these priorities — by increasing awareness and community, expanding access to effective treatment, and advancing research. Together, these efforts are designed to work in concert, improving clinical training, implementing screening for early identification, strengthening pathways from diagnosis to care, and increasing the likelihood that people receive evidence-based treatment.

At the same time, the scale of the problem revealed in this report makes clear that progress depends on collective action across the field. Clinicians, health systems, educators, researchers, policymakers, advocates, and people with lived experience all have a role to play. Together, these efforts can help ensure that people with OCD reach effective treatment sooner, reducing years of unnecessary confusion and distress. 

How You Can Help

Join us in building better access to effective treatment for people with OCD:

The current state of treatment for OCD in the U.S. is sobering, but it is not the end of the story. OCD is treatable, recovery is possible, and change can happen as awareness grows and access expands. With continued effort, the gap between how many are struggling and how many receive effective care can begin to close. A brighter future is possible — and we can build it together.

References

  1. Dell’Osso, B., Benatti, B., Grancini, B., Vismara, M., De Carlo, V., Cirnigliaro, G., Albert, U., & Viganò, C. (2019). Investigating duration of illness and duration of untreated illness in obsessive compulsive disorder reveals patients remain at length pharmacologically untreated. International Journal of Psychiatry in Clinical Practice, 23(4), 311–313. https://doi.org/10.1080/13651501.2019.1621348
  2. Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15(1), 53-63. https://doi.org/10.1038/mp.2008.94
  3. Stein, D. J., Ruscio, A. M., Altwaijri, Y., Chiu, W. T., Sampson, N. A., Aguilar-Gaxiola, S., Al-Hamzawi, A., Alonso, J., Chardoul, S., Gureje, O., Hu, C., Karam, E. G., McGrath, J. J., Navarro-Mateu, F., Scott, K. M., Stagnaro, J. C., Torres, Y., Vladescu, C., Wciórka, J., Xavier, M., … Kessler, R. C. (2025). Obsessive-compulsive disorder in the World Mental Health surveys. Research Square, rs.3.rs-6090427. https://doi.org/10.21203/rs.3.rs-6090427/v1
  4. Ringeisen, H., Edlund, M., Guyer, H., Dever, J., Carpenter, L., Olfson, M., First, M., Geiger, P., Liao, D., Peytchev, A., Carr, C., Chwastiak, L., Dixon, L. B., Monroe-Devita, M., Scott Stroup, T., Swanson, J., Swartz, M., Gibbons, R., Stambaugh, L., Bareis, N., … Mental Health and Substance Use Disorders Prevalence Study Consortium (2025). Prevalence of past-year mental and substance use disorders, 2021-2022. Psychiatric Services (Washington, D.C.), 76(8), 720–728. https://doi.org/10.1176/appi.ps.20240329

IOCDF Training & Resources for Clinicians

When clinicians have easier access to best practices in OCD diagnosis and treatment, more people can receive effective care. The IOCDF’s Training Institute offers evidence-based programs for clinicians at every stage of practice, including:

  • A robust, on-demand webinar catalog (CE-eligible!) covering fundamentals, modalities, related disorders, and comorbidities. The catalog includes access to the free webinar, OCD Basics. 
  • IOCDF’s Training Institute offers intensive workshops and events, consultation groups, and more for clinicians of every level.
  • Professional Members at the IOCDF join a nationwide network of committed professionals, are eligible for listing on our Resource Directory, and have access to special pricing for Training Institute offerings.

The post The Most Effective OCD Treatment Reaches Almost No One: Here’s What We Can Do About It appeared first on International OCD Foundation.

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It Is the Journey, Not the Destination: Moving From End Points to Trajectories When Assessing Chatbot Mental Health Safety

Large language models are rapidly becoming embedded in everyday life through artificial intelligence (AI) chatbots that people use for practical assistance and companionship, as well as for support with mental health and emotional wellbeing. Alongside clear benefits, clinicians and public reports increasingly describe a minority of users whose interactions seem to drift over days or weeks toward strongly questionable convictions, delusions or suicidal crises. Importantly, clinically meaningful deterioration can occur even without overtly unsafe text outputs, via more insidious processes such as compulsive use and sleep disruption, as well as withdrawal from human contact and progressive narrowing of attention around the chatbot relationship. In this Viewpoint, we argue that risk often arises not at a single tipping point but through trajectory effects that accumulate across extended dialogue, and that prevailing safety evaluation approaches are misaligned with this reality because they primarily score risk at discrete conversational endpoints often reached through scripted dialogues lasting just a single turn or several turns. Mental health benchmarks and safety suites (including clinician-informed efforts) have advanced the field by testing refusal behaviour, toxicity, and adversarial prompting, but they often treat the last message as the unit of analysis and therefore miss when risk-relevant relational cues, signs of validation, contradiction handling, and shifts in certainty first emerge and how they compound. We propose that mental health safety assessment should shift from endpoints to trajectories by 1) treating the whole dialogue, not just the end result, as the focus of evaluation; 2) reporting turn-by-turn dynamics such as delusion confirmation and harm enablement, as well as timing and persistence of safety interventions; and 3) calibrating short multi-turn tests against longer, clinically realistic interaction sequences that can reveal context-length effects and drift. We further argue that transcript-only evaluation is insufficient in mental health contexts. Similar language can reflect very different internal states, and the relationship between expressed psychopathology and real-world harm is non-linear. Safety research should therefore incorporate proximal human outcomes after interactions (e.g., shifts in certainty, openness to counterevidence, arousal, urge to continue, and subsequent sleep or behaviour) and build prospective clinical surveillance infrastructure that supports consented transcript donation and linkage to health outcomes. Together, these steps would enable benchmarks that are clinically relevant and better aligned with the kinds of harms now being observed in real-world chatbot use.
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Social cognitive deficits and altered multi-brain dynamics during problem-solving in heroin abstainers: An fNIRS hyperscanning study

Despite extensive research on the neurobiology of addiction, little is known about how repeated drug use and withdrawal are related to social functioning impairments in humans, a highly social species. This obscures the broader societal impact of drug addiction and limits treatment efficacy. This study examined social cognitive impairment and its multi-brain neural underpinnings during socially interactive problem-solving in heroin use disorder (HUD), and further explored their co-occurrence with protracted withdrawal symptoms.

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The Unspoken Toll: Why Exam Pressure Must Be Part of the Youth Mental Health Discussion

A Conversation with Tatum Redmond and Amanda van der Vyver-Anderson from Community Keepers, South Africa

By Mai El Shoush, Partnerships Campaign Manager, Stavros Niarchos Foundation (SNF) Global Center for Child and Adolescent Mental Health at the Child Mind Institute

Community Keepers is an award-winning organization based in Stellenbosch, South Africa, which works to improve the social and emotional well-being of learners and their caregivers. The SNF Global Center at the Child Mind Institute works with the organization to further advance the comprehensive mission of transforming schools into safe spaces where student well-being is prioritized alongside academic achievement. This includes strengthening the workforce to expand evidence-based support and brief interventions through low-intensity psychological therapy approaches.

While addressing the workforce gaps, the partnership has yielded valuable insight into the essential competencies front line workers require to effectively support young people experiencing mental health challenges. Together with other NGOs, Community Keepers has also been instrumental in strengthening the process of developing context-sensitive and culturally appropriate training materials scheduled for pilot implementation in South Africa later this year – representing an important step towards strengthening mental health care systems for underserved communities. The partnership also extends beyond training development, as the SNF Global Center at the Child Mind Institute continues to collaborate closely with Community Keepers on an upcoming randomized control trial (RCT). The scientific evaluation will assess both the feasibility of establishing a virtual clinic for young people and the effectiveness of remotely delivered cognitive behavioral therapy (CBT) interventions via video consultations. The research is intended to expand access to equitable and quality mental health care for young people across South Africa. Tatum Redmond has been a care facilitator in one of the Community Keepers’ high school-based offices, while Amanda van der Vyver-Anderson is an educational psychologist and heads the training and development of Mental Health First Aiders for internal and external staff.

Amanda van der Vyver-Anderson

How important is it to approach issues such as academic pressure within the wider conversation around youth mental health in South Africa, and beyond?

It is critical to integrate discussions of exam stress into the broader dialogue surrounding youth mental health, both here in South Africa and internationally. We see countless students under immense pressure to not only pass, but also secure their future prospects and meet family expectations. This is unfortunately often dismissed as “just school” or a “normal” experience. However, it impacts a substantial number of young people, often more severely than we acknowledge. And the level of support available is not equitable across the board. Addressing this is crucial because of the detrimental effects on core cognitive functions — and ultimately, academic performance — as well as the significant toll on mental health. This can manifest as anxiety, burnout, and even depression.

In what ways can exam-related stress connect to broader mental health challenges?

While a certain level of stress can serve as a beneficial motivator, severe distress can lead to cognitive shutdown. This specifically impacts the executive functions — planning, organizing, prioritizing, working memory, focus, and concentration — that are fundamental to preparing for exams. This shutdown can then create a detrimental, ongoing cycle of heightened stress about exams or the future, coupled with a decline in the ability to take effective action.

It’s vital to recognize that exam stress does not merely stay in the exam room — it can be a gateway to larger mental health challenges. Constant stress regarding school performance, marks, or the fear of failure can escalate into conditions like anxiety, chronic overwhelm, or depression. Students may experience sleep disruption, poor nutrition, and feelings of inadequacy. And these symptoms often persist long after the test is over. Compounding this is the reluctance of most students to seek help because they believe their feelings are normal or fear appearing weak. Yet, if left unaddressed, sustained pressure along with these symptoms can profoundly affect their psychological well-being.

Tatum Redmond

What role do community-focused organizations such as Community Keepers play in linking academic stress to systematic youth mental health support and improvement?

Organizations like Community Keepers play a truly pivotal role — not merely as emergency responders but as an integrated support system within educational institutions as well. Crucially, they move beyond immediate crisis response by collaborating with schools to develop long-term support and to provide safe spaces to engage in dialogue. They offer genuine attention and care when learners are struggling with school demands, exams, and family pressures.

The approach is not just “addressing stress today” but asking, “How can we create an enduring environment where young people feel safe, supported, and connected?” Doing this requires collaboration with the learners themselves, educators and school staff, as well as parents, caregivers, and community leaders.

What factors make schools uniquely positioned to be safe and supportive spaces?
Schools are exceptionally well-positioned to serve as safe and supportive spaces for students for several key reasons:

  • Learners spend a substantial portion of their day at school, making it a primary setting where adults can observe signs of distress, anxiety, or coping difficulties.
  • Schools have the opportunity to house critical personnel — teachers, counselors, and external partners like Community Keepers — who are on hand to offer support or a listening ear.
  • The curriculum can extend beyond academic skills and learning. It can include mental health and emotional literacy, stress management, and peer support.
  • When a school actively fosters an environment of safety, respect, and validation, it fundamentally alters how learners navigate pressure, stress, or complex personal problems. Having a guaranteed safe space at school is deeply stabilizing for the mind.

How can the goal of securing mental health support as a pillar of education be reached?
Achieving the goal of establishing mental health support as a solid, non-negotiable pillar of education requires several strategic commitments:

  • Schools must actively allocate resources for it, ensuring adequate numbers of support staff, rather than relying on minimal provision. Teachers need training to recognize signs of distress and respond helpfully and appropriately.
  • Mental health literacy must be integrated into the curriculum. Instead of only focusing on academic subjects, topics like stress management, emotional intelligence, and maintaining healthy relationships should be covered.
  • The government must demonstrate a serious commitment, including mental health support in education budgets, developing clear policies, and ensuring rigorous follow-through.

How have your practices and initiatives in promoting and supporting schools as safe spaces made meaningful change?
We’ve observed tangible change in the learners’ attitudes; those who feel comfortable expressing their emotions are generally happier and more resilient because they have established a safe, non-judgmental space where trust is built.

What role can teachers and school leadership play as partners in creating an evidence-based supportive learning environment? Where are the gaps in building capacity and how can they be better supported?
Educators and school leadership are essential partners in establishing an environment that successfully supports learner mental health and cultivates a culture of well-being. They can do so by:

  • Prioritizing both the physical space and curriculum time necessary for learners to engage with support services.
  • Serving as role models who embody and encourage emotional regulation and actively normalize help-seeking behaviour.
  • Remaining deeply cognisant of factors that contribute to learner distress so as to not inadvertently exacerbate it.

Investing in staff wellness and support, capacity building, and policy reform is not merely beneficial, but a foundational requirement to capacitate educators effectively. This allows them to sustainably support the mental health of their entire school community.

The SNF Global Center’s work in South Africa is carried out through the Child and Adolescent Mental Health Initiative (CAMHI South Africa). We are proud to expand the partnership with Community Keepers and value their collaboration towards co-creating scalable, school-centered mental health approaches that authentically respond to the diverse lived-experiences of young people.

The post The Unspoken Toll: Why Exam Pressure Must Be Part of the Youth Mental Health Discussion appeared first on Child Mind Institute.

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AI Chatbots for Mental Health Self-Management: Lived Experience–Centered Qualitative Study

Background: Large language models (LLMs) now enable chatbots to engage in sensitive mental health conversations, including depression self-management. Yet their rapid deployment often overlooks how well these tools align with the priorities of people with lived experiences, which can introduce harms such as inaccurate information, lack of empathy, or inadequate crisis support. Objective: This study explores how people with lived experience of depression experience an LLM-based mental health chatbot in self-management contexts, and what perceived benefits, limitations, and concerns inform harm-mitigating design implications. Methods: We developed a technology probe (a GPT-4o–based chatbot named Zenny) designed to simulate depression self-management scenarios grounded in prior research. We conducted interviews with 17 individuals with lived experiences of depression, who interacted with Zenny during the session. We applied qualitative content analysis to interview transcripts, notes, and chat logs using sensitizing concepts related to values and harms. Results: We identified 3 themes shaping participants’ evaluations: (1) informational accuracy and applicability, including concerns about incorrect or misleading information, vagueness, and fit with personal constraints; (2) emotional support vs need for human connection, including validation and a judgment-free space alongside perceived limits of machine empathy; and (3) a personalization-privacy dilemma, where participants wanted more tailored guidance while withholding sensitive information and using privacy-preserving tactics. Conclusions: People with lived experience of depression evaluated LLM-based mental health chatbots through intertwined priorities of actionable information, emotional validation with clear limits, and personalization that does not require unsafe data disclosure. These findings suggest concrete design strategies to mitigate harms and support LLM-based tools as complements to, rather than replacements for, human support and recovery.
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Impact of abnormal metabolic-immunoinflammatory pathway on splenomegaly in patients with chronic schizophrenia and exploration of risk factors: case-control study

ObjectiveThis study aimed to identify risk factors for splenomegaly in chronic schizophrenia patients and clarify associations among metabolic−immunoinflammatory pathways, psychiatric symptoms and splenomegaly. The findings will help optimize somatic monitoring and intervention strategies.MethodsA case−control design was used. A total of 426 patients were assigned to splenomegaly (n= 165) and non−splenomegaly (n= 261) groups according to abdominal ultrasound. Demographic data, clinical information, and antipsychotic use were collected. Mental symptoms were assessed by the Positive and Negative Syndrome Scale. Hematological indicators were detected, and abdominal ultrasound was performed to evaluate spleen morphology and fatty liver occurrence. SPSS 24.0 was used for statistical analysis, including univariate analysis and binary logistic regression to screen influencing factors of splenomegaly.ResultsThe splenomegaly group had significantly higher levels of lipoprotein(a), cholesterol, triglycerides, HbA1c, CRP, IL-6 and β2-microglobulin than the non-splenomegaly group (all p < 0.05). The incidence of fatty liver and PANSS negative symptom score were significantly higher in the splenomegaly group, while the usage rate of aripiprazole was lower (p< 0.05). Binary logistic regression showed that HbA1c (OR = 1.797, p = 0.046) and PANSS negative symptom score (OR = 2.258, p = 0.003) were independently associated with splenomegaly. Aripiprazole use was associated with lower odds of splenomegaly (OR = 0.656, p = 0.041).ConclusionSplenomegaly in chronic schizophrenia patients is closely linked to metabolic abnormalities and immunoinflammatory activation. Prominent negative symptoms are independently associated with splenomegaly and may serve as an early warning signal. Aripiprazole use is independently associated with reduced odds of splenomegaly.