Obsessive-Compulsive Disorder

Care in All Settings

Resources The Quality Standard In Brief Advisory Committee About

Summary

The following quality standard addresses care for people with obsessive–compulsive disorder.

It applies to care for people in all settings but focuses on primary and community care. This quality standard focuses on care for adults (age 18 years and older), but it includes content that is relevant for children and adolescents (under age 18 years). It does not address care for some disorders that are related to obsessive–compulsive disorder (e.g., body dysmorphic disorder, hoarding disorder, excoriation disorder, or trichotillomania), because these are separate disorders that require different treatment.

For information about anxiety disorders, please see Anxiety Disorders: Care in All Settings, which was developed concurrently with this quality standard.

Scope of This Quality Standard

This quality standard addresses care for people living with obsessive–compulsive disorder (OCD). It applies to care for people in all settings but focuses on primary and community care. This quality standard focuses on care for adults (age 18 years and older), but it includes content that is relevant for children and adolescents (under age 18 years).

Few clinical practice guidelines were available to support the development of a comprehensive quality standard for children and adolescents. In this standard, guidance is provided where relevant clinical practice guideline recommendations and content for children and adolescents were available.

This quality standard uses the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) categorization of OCD as the presence of obsessions, compulsions, or both:

Obsessions are “recurrent and persistent thoughts, urges, or impulses that are experienced as ... intrusive and unwanted, and that in most individuals cause marked anxiety or distress. The individual attempts to ignore or suppress such thoughts, urges, or images, or to neutralize them with some other thought or action”
Compulsions are “repetitive behaviours (e.g., hand washing, ordering, checking) or mental acts (e.g., praying, counting, repeating words silently) that the individual feels driven to perform in response to an obsession or according to rules that must be applied rigidly. The behaviours or mental acts are aimed at preventing or reducing anxiety or stress or preventing some dreaded event or situation”

This quality standard does not include OCD-related disorders, such as body dysmorphic disorder, hoarding disorder, excoriation disorder, or trichotillomania. Disorders related to OCD were excluded from the scope because of limitations in the relevant clinical practice guidelines. This quality standard also does not address trauma- and stressor-related disorders (including post-traumatic stress disorder).

For information about anxiety disorders, please see Anxiety Disorders: Care in All Settings, which was developed concurrently with this quality standard.

Why This Quality Standard Is Needed

Obsessive–compulsive disorder is characterized by the presence of obsessions (recurrent, persistent, intrusive thoughts, urges, or images) and/or compulsions (repetitive behaviours). It is estimated that 1.6 to 2.3% of adults (1 in 50) have had OCD at some time in their life (lifetime prevalence). Based on a Statistics Canada population-based health survey, the prevalence of diagnosed OCD in Canada is 0.93%, or 1 in 100 people aged 15 or older. Among children, OCD is more common in boys; but among adults, men and women are equally affected.

The disabling symptoms of OCD contribute to a poorer quality of life, not only for people with OCD, but also for their families. The debilitating symptoms and considerable functional impairment associated with OCD lead to a higher risk of suicidal ideation and suicide attempts. About one-quarter of people with OCD have attempted suicide.

Obsessive–compulsive disorder also contributes to the considerable economic burden that mental health and addictions have on society. In 2015, Canada’s estimated public and private mental health expenditure was $15.8 billion.

In 2018, 12.3% of adults and 21.6% of children and youth in Ontario with OCD had their first contact for OCD in the emergency department (ED), which means that they had not accessed mental health or addictions services from a physician in the 2 years prior (NACRS, DAD, OMHRS, and OHIP Claims Database, provided by ICES, 2019*). In 2018, 460 adults and 299 children and youth visited the ED for OCD (NACRS, provided by ICES, 2019*). Further, for people who visited the ED for OCD, the rate of unscheduled ED revisits within 30 days for mental health and addictions was 22.4% (NACRS, provided by ICES, 2019*). Emergency department revisits were more common in females than in males (27.2% versus 16.8%; NACRS, provided by ICES, 2019*).

In 2017, there were 343 hospitalizations for OCD, with the number ranging from 1–5 to 59 across regions in Ontario (DAD, OMHRS, provided by ICES, 2019*). For people in Ontario with a hospital admission for OCD, the rate of unscheduled hospital readmissions within 30 days for mental health and addictions was 10.9%. There was variation in the hospital readmission rate across regions in Ontario, with the highest rate at 20.1% in the Mississauga Halton local health integration network (LHIN) compared with 0% in the Erie St. Clair, South East, and South West LHINs. These findings may reflect people getting care from providers who are not physicians, people unable to access mental health and addictions services delivered by physicians, and potential missed opportunities for mental health services in primary and community care.

Several equity factors—including gender, income, comorbidity, Indigenous identity, and geography—may affect specific populations with OCD. The lowest neighbourhood income quintile had the highest proportion of people who reported a diagnosis of OCD or an anxiety disorder (Canadian Community Health Survey, Mental Health, 2012). As well, more people in rural areas reported a diagnosis of OCD or an anxiety disorder than people in urban areas (7.5% versus 4.8%, respectively; Canadian Community Health Survey, Mental Health, 2012).

There are substantial gaps in the health care system when it comes to treating people with OCD. Health care professionals do not always recognize the different ways OCD can present or know what the appropriate treatments are; this represents a knowledge gap and opportunity for education. Many primary care physicians see patients with mental health and addictions needs, but few report feeling well prepared to care for them. Further, people with OCD can be embarrassed about their obsessions and compulsions or can be unaware of where to find help; either can result in them not seeking professional help. In a literature review examining the factors associated with non-treatment or delayed treatment seeking, the research studies found that people with OCD delay seeking treatment for many years, ranging from 3 to 17 years.

These factors all contribute to delays in diagnosis and treatment. Although effective treatments exist, on average 52.8% of people aged 15 years and older globally who require care for OCD do not receive treatment. In adults, the mean time from first experiencing minor symptoms to the onset of OCD is 6 years, and an additional 11 years passes before they receive treatment. There are many opportunities to improve OCD care in Ontario so that people have timely access to appropriate, evidence-based treatment.

Principles Underpinning This Quality Standard

This quality standard was created, and should be implemented, according to the Patient Declaration of Values for Ontario. This declaration “is a vision that articulates a path toward patient partnership across the health care system in Ontario. It describes a set of foundational principles that are considered from the perspective of Ontario patients, and serves as a guidance document for those involved in our health care system.”

These values are:

Respect and dignity
Empathy and compassion
Accountability
Transparency
Equity and engagement

Health care professionals should acknowledge and work toward addressing the historical and present-day impacts of colonization in the context of the lives of Indigenous Peoples throughout Canada. It is important for care to be adapted to ensure that it is culturally appropriate and safe for First Nations, Inuit, and Métis peoples. This work involves being sensitive to the impacts of intergenerational and present-day traumas and the physical, mental, emotional, and social harms experienced by Indigenous people, families, and communities. This quality standard uses existing clinical practice guideline sources developed by groups that may not include culturally relevant care or acknowledge traditional Indigenous beliefs, practices, and models of care.

This quality standard is underpinned by the principle of recovery, as described in the Mental Health Strategy for Canada. People with obsessive–compulsive disorder can lead meaningful lives. People with obsessive–compulsive disorder have a right to services provided in an environment that promotes hope, empowerment, self-determination, and optimism, and that are embedded in the values and practices associated with recovery-oriented care. The concept of recovery refers to “living a satisfying, hopeful, and contributing life, even when there are on-going limitations caused by mental health problems and illnesses.” As described in the Mental Health Strategy for Canada, “recovery—a process in which people living with mental health problems and mental illnesses are actively engaged in their own journey of well-being—is possible for everyone. Recovery journeys build on individual, family, cultural, and community strengths and can be supported by many types of services, supports, and treatments.”

Mental wellness is defined as a balance of the mental, physical, spiritual, and emotional, which is enriched as individuals have: purpose in their daily lives, hope for their future, a sense of belonging, and a sense of meaning. These elements of mental wellness are supported by factors such as culture, language, Elders, families, and creation. The First Nations Mental Wellness Continuum Framework provides an approach that “respects, values, and utilizes First Nations cultural knowledge, approaches, languages, and ways of knowing.”

How Success Can Be Measured

The Anxiety Disorders and Obsessive–Compulsive Disorder Quality Standards Advisory Committee identified some overarching goals for this quality standard. These goals were mapped to indicators that can be used to monitor the progress being made to improve care for people with OCD. Some indicators are provincially measurable, while some can be measured using only locally sourced data.

Collecting and using data associated with this quality standard is optional. However, data will help you assess the quality of care you are delivering and the effectiveness of your quality improvement efforts.

We realize this standard includes a lengthy list of indicators. We’ve given you this list so you don’t have to create your own quality improvement indicators. We recommend you identify areas to focus on in the quality standard and then use one or more of the associated indicators to guide and evaluate your quality improvement efforts.

See Appendix 2 for additional details on how to measure these indicators and our measurement guide for more information and support.

Indicators That Can Be Measured Using Provincial Data

Percentage of people with an unscheduled ED visit for OCD for whom the ED was the first point of contact for mental health and addictions care
Percentage of repeat unscheduled ED visits related to mental health and addictions within 30 days following an unscheduled ED visit for OCD
Percentage of inpatient readmissions related to mental health and addictions within 30 days of discharge following a hospital admission for OCD

The above indicators may capture care for only a subset of people with OCD. See the section below on local measurement for additional indicators that may be used to assess quality of care.

Indicators That Can Be Measured Using Only Local Data

Percentage of people with suspected OCD, or who have had a positive screening result for OCD, who receive a comprehensive assessment that determines whether they have OCD, the severity of their symptoms, whether they have any comorbid conditions, and whether they have any associated functional impairment
Percentage of people with OCD for whom cognitive behavioural therapy (CBT) with exposure and response prevention was determined to be appropriate and who receive CBT with exposure and response prevention delivered by a health care professional with expertise in OCD
Percentage of people with OCD who report an improvement in their quality of life
Percentage of people with OCD who “strongly agree” with the following question: “The services I have received have helped me deal more effectively with my life’s challenges”†
Percentage of people with OCD who complete CBT with exposure and response prevention and have reliable recovery‡
Percentage of people with OCD who complete CBT with exposure and response prevention and have reliable improvement‡
Percentage of people with moderate to severe OCD, or people who are not responding to psychological treatment for whom pharmacological treatment was determined to be appropriate, and who receive a selective serotonin reuptake inhibitor (SSRI) at an OCD-specific dose and duration

What Does It Mean for Patients and Caregivers?

“I live in Northern Ontario and when I was looking for treatment there was nothing geared toward OCD. It took me many tries with many different providers before I was able to get treatment that was successful for me.”

“There are a lot of misconceptions and misinformation out there about OCD. This quality standard could help standardize knowledge and skills among providers. It is exciting to think that Ontario could have increased understanding and more services to help people. The quality standard might also give people with OCD the courage to advocate for themselves.”

– Melanie Lefebvre, Lived Experience Advisor, Anxiety Disorders and Obsessive-Compulsive Disorder Quality Standards Advisory Committee

What Does It Mean for Providers?

“Identification of OCD [quality statement 1] should be the cornerstone of providing care to patients, because it allows us to intervene before the disorder becomes chronic, when individuals are younger in age and may swiftly respond to treatment. It also means they will have fewer years of suffering.”

“Young people with OCD may feel overwhelmed, misunderstood and sometimes ashamed about what they’re experiencing. They often feel very relieved as soon as they learn what’s going on, that it’s not uncommon, and that there is an effective treatment. This quality standard will help contextualize what care is available and what is accessible for individuals with OCD in Ontario.”

- Dr. Noam Soreni, Anxiety Disorders and Obsessive-Compulsive Disorder Quality Standards Advisory Committee member

Timeline for This Quality Standard

This quality standard was completed in January 2020.

Evidence to Improve Care