Improving outcomes for people with obsessive–compulsive disorder

Obsessive–compulsive disorder (OCD) is a condition in much need of our attention. With as many as one in 100 New Zealanders living with OCD,¹ it not only causes greater levels of functional impairment than other anxiety disorders,¹ with an accompanying higher risk of suicide,² but is commonly undetected across our healthcare services. Studies show as many as 50.5 per cent of primary care clinicians and 39 per cent of mental health clinicians misdiagnose OCD.³

When people present for help, it is common for comorbid conditions, such as depression, to be detected. However, a lack of awareness of, and screening for, OCD often results in a misdiagnosis of generalised anxiety, leaving the condition undetected and untreated.

Aside from a lack of screening in clinical practice, another major barrier to detection is the deep feeling of shame many people with OCD experience.

OCD can present itself in a variety of ways. At its heart, however, are the incredibly intrusive, distressing cognitions (images, thoughts, urges) people experience, which trigger compulsive behaviours that act to help people avoid or neutralise the intrusions and provide a short-term sense of safety (see figure).

Themes of OCD intrusions often centre around a fear of harm coming either to the person, their loved ones or people they may come into contact with. There is often a heightened sense of responsibility by the person to take action in order to avoid the feared catastrophe the intrusions speak of.

Themes of “harm to others” may circulate around contamination, accidentally causing harm, or carrying out violent or sexual acts against others. These feared events could be future-based, or there may be a fear that harm has been unknowingly caused in the past.

Despite the awareness that the intrusive thoughts may in fact not be true, people with OCD often hide these internal experiences from family, loved ones and healthcare professionals for a long time, due to fear of what the thoughts might mean and of how people may respond if they disclose them.

It is important for clinicians, and particularly people experiencing OCD, to know two things about intrusive cognitions. First, they are a normal part of our human experience, with research showing many of us have similar cognitive experiences to some degree on a fairly regular basis.⁴ Second, there is often no risk or real intention of people acting on the thoughts as they are commonly ego-dystonic, or inconsistent with one’s self-concept, beliefs and personality.

Whether it is a random thought of driving across the median barrier in a car or imagining pushing someone off a cliff while on a walk, these common intrusions we all experience are often a “by-product” of our imagination, coupled with sensory information being processed from our surrounding environments.

The level of distress we experience from these intrusions directly relates to the level of meaning we attribute to them. When they are seen as “just random thoughts”, they can be more easily dismissed, with less risk of them returning. When they are interpreted to have great meaning, such as being a potential subconscious desire, anxiety is triggered, producing a sense of threat and hypervigilance, and the intrusions begin to take on a life of their own.

This misinterpretation perpetuates a cascade of experiences with the return of the intrusions, escalating emotional and physiological responses, and actions that wind the person into a vicious cycle of OCD.

The more the intrusive cognitions appear, the more the person takes an inference of meaning, thus driving up anxiety and shutting the person down, especially if they link to ego-dystonic immoral sexual or violent acts.

The following personal account of OCD helpfully shows the level of distress and impairment and the sense of entrapment the condition can cause, highlighting the need for us to approach people with care and empower ourselves with greater knowledge.

OCD is a specific beast of its own, with hooks and tentacles that drive deep into the belief systems of those it holds captive

Yvonne’s story is sadly too common for many people experiencing OCD in New Zealand – onset at a time of great stress, with delay in disclosure of intrusive cognitions and misinterpretation by health professionals, leading to delay in appropriate treatment.

The other sad reality is the lack of evidence-based psychological treatment available, across both the public and private mental health sectors.

OCD is a specific beast of its own, with hooks and tentacles that drive deep into the belief systems of those it holds captive. Treatment is not straightforward and needs to be specifically targeted at shifting both the meaning people make about their intrusions and the ways they interact with them through the process of engaging in repetitive mental or overt compulsive behaviours.

It is not uncommon for those with OCD to reach out to their family system and surrounding loved ones for help to ease their distress. Unfortunately, this often leads to a reinforcing external system of reassurance, safety behaviours and wider system functional impact that can strain the most loving relationships and families.

Screening for OCD is essential when people present with anxiety and depression in primary care, particularly when it is severe and when there is limited to no response to usual treatments.

With onset occurring in childhood and adolescence in more than 50 per cent of cases,⁵ and duration of untreated illness the strongest identified predictor of treatment outcome,⁵ it is important not to trivialise symptoms presenting in childhood as “quirks” and to opt for watchful waiting. Further assessment and treatment can support young people and their families and whānau to understand what they are experiencing and reduce impact during integral stages of growth and development.

Several helpful screening questions for adults and children can help improve detection of intrusive thoughts, compulsive behaviours and associated functional impairment:

• Are there any thoughts that keep bothering you that you can’t get rid of?
• Do you have unwanted ideas, images or impulses that distress or upset you?
• Do you wash, clean a lot or get stuck checking things?
• Do your daily routines take a long time to finish?
• Are you concerned about order or significantly upset by mess?

When compulsive behaviours are detected, it is essential to get a sense of the length of time people spend on them, the accompanying level of distress, and the functional impairment in day-to-day life.

A positive response to any of the questions above warrants further assessment, including potential referral to specialist mental health services, particularly if the person is experiencing suicidal ideation and/or considerable functional impairment and distress.

It is also essential to be aware that women can be at higher risk of onset or exacerbation of OCD during premenstruum, pregnancy, postpartum and menopause due to an association with reproductive cycle events.⁵

Digital mental health and addiction assessment tools can greatly assist in improving detection rates of commonly undiagnosed conditions, such as OCD.

Loffty is a locally grown example, providing comprehensive online screening across 30 different disorders (loffty.com). It also screens for type, severity and duration of symptoms, trauma and risk, and family and past mental health history, all presented within a final report that offers potential treatment goals and plans.

In terms of individual psychometric measures, the Yale–Brown Obsessive Compulsive Scale (Y-BOCS) is considered a gold standard assessment tool, supporting detection of OCD symptoms and accurate diagnosis.⁵

A raft of research and guidelines in New Zealand and overseas identify cognitive behavioural therapy (CBT) as a mainstay of treatment for mild to severe presentations of OCD, with ERP an integral component of this approach.⁵

Selective serotonin reuptake inhibitors (SSRIs; often at higher doses) or clomipramine plus OCD-specific CBT is the recommended combined treatment for moderate to severe presentations of OCD.

Evidence shows people with “treatment-resistant” OCD may gain benefit from off-label use of second-generation antipsychotics as an augmentation treatment with SSRIs, with risperidone having the most studies showing evidence of positive outcomes.⁵

When referring patients for CBT, it is important to note that not all therapists (including psychologists) are equipped with the knowledge, skills and experience to effectively treat OCD. Therefore, it is essential to know who the experts are in your area and to ensure patients receive an evidence-based psychological treatment.

In terms of other treatments, research shows repetitive transcranial magnetic stimulation (rTMS) is currently the most promising non-invasive modulatory intervention for OCD across a number of small randomised controlled trials.⁵

As mentioned, family and close loved ones often become involved in accommodating OCD; therefore, assessment and treatment planning are often more successful when they are involved.

Electronic or online CBT accessed through a digital platform such as an app or website offers a promising option for immediate access to evidence-based psychological treatment for OCD. eCBT provides highly scalable and flexible CBT. Research shows it can produce similar effect sizes as in-person CBT,⁶ while reducing potential therapist drift and ensuring target mechanisms of treatment are delivered.

eCBT can be delivered either as a stand-alone self-guided or prescribed treatment, incorporated into group therapy or blended into in-person psychological treatment. Guided eCBT produces better outcomes and higher levels of adherence than self-guided,⁶ and prescribed options often allow clinicians the opportunity to monitor progress and outcomes as patients work through the structured treatment courses.

New Zealand’s first online OCD course will be launched later this year by Just a Thought. This course is currently being carefully adapted from the original programme provided by THIS WAY UP in Australia to ensure cultural fit for Aotearoa.

The original THIS WAY UP course has been shown to significantly improve OCD symptoms, with 54 per cent of those who completed it no longer meeting criteria for OCD at three-month follow-up. Adherence was maintained at 75 per cent when follow-up support was provided.⁶

Early detection and treatment are vital to more positive outcomes for people experiencing OCD; however, treatment must be evidence-based and catered for specific presentations to be effective. Primary care clinicians should ensure patients with moderate to severe anxiety and depression, particularly those not responding to treatment, are screened for OCD through a series of simple questions.

A considered and compassionate approach, coupled with psychoeducation, validation, hope and the delivery of evidence-based treatment can make the world of difference to patients presenting with symptoms of OCD, allowing them to go on to live meaningful, enjoyable lives.

Using eCBT ensures patients can access immediate evidence-based psychological treatment, either as a standalone option or blended into in-person therapy. Psychological interventions should incorporate ERP to ensure patients can learn to manage the perpetuating obsessions and compulsions of OCD without the significant functional impairment that can accompany the condition.

Anna Elders is the clinical lead for Just a Thought, a mental health nurse practitioner and cognitive behavioural therapist for Tāmaki Health, and an honorary teaching fellow at the University of Auckland; Yvonne Tse is an Auckland-based management consultant who was diagnosed with OCD in 2020