Schizophrenia

Care in the Community for Adults

Resources The Quality Standard In Brief Advisory Committee About

Summary

This quality standard addresses care for adults aged 18 years and older with a diagnosis of schizophrenia. The quality standard focuses on care provided in the community, including primary care, hospital outpatient care, rehabilitation, care in correctional facilities, and community supports and services. For a quality standard that addresses care for adults with schizophrenia who present at the emergency department or are admitted to hospital, please refer to the quality standard Schizophrenia: Care for Adults in Hospitals.

Scope of This Quality Standard

This quality standard addresses care for adults aged 18 years and older with a primary diagnosis of schizophrenia, including related disorders such as schizoaffective disorder. It also provides guidance on early psychosis intervention for people who experience a first episode of schizophrenia. The quality standard focuses on care provided in the community, including primary care, hospital outpatient care, rehabilitation, and community supports and services. The quality standard also applies to care in correctional facilities. People with schizophrenia and other mental health conditions are disproportionally represented in the correctional system. For some people with schizophrenia, their first point of contact for mental health care is after becoming involved with the correctional system. For these individuals, it is particularly important that screening processes at intake be sufficiently well developed that affected individuals can be diagnosed with schizophrenia. For a quality standard that addresses care for adults with schizophrenia who present at the emergency department or are admitted to hospital, please refer to the quality standard Schizophrenia: Care for Adults in Hospitals. This quality standard includes 15 quality statements addressing areas identified by Health Quality Ontario’s Schizophrenia Care in the Community Quality Standard Advisory Committee as having high potential to improve the quality of community-based care for adults with schizophrenia.

Terminology Used in This Quality Standard

Health Care Professionals, Providers, and Team In this quality standard, “health care professionals” refers to regulated professionals, such as physicians, nurses, nurse practitioners, pharmacists, physiotherapists, psychologists, occupational therapists, social workers, and speech-language pathologists. The term “health care providers” is used when also including people in unregulated professions, such as recreational staff, peer support workers, administrative staff, and spiritual care staff. The term “health care team” is used when referring to all individuals who are involved in providing care (including health care professionals and health care providers). Substitute Decision-Maker “Substitute decision-maker” refers to a person who makes care and treatment decisions on another person’s behalf if that person becomes mentally incapable of making decisions for themself. Capacity is issue- or task-specific. The substitute decision-maker should be involved in ongoing discussions with the person about their goals of care, wishes, values, and beliefs so that the substitute decision-maker is empowered to participate in the health care consent process, if required. The substitute decision-maker makes decisions based on their understanding of the person’s wishes or, if these wishes are unknown or not applicable, makes choices that are consistent with the person’s known values and beliefs and are in their best interests. Ontario’s Health Care Consent Act outlines a hierarchical list of people who are automatically considered a substitute decision-maker when a person is incapable of making decisions about their own care. If a capable person prefers to assign someone to this role other than their automatic substitute decision-maker, they can formally appoint someone else using a “Power of Attorney for Personal Care.” This is a legal document in which one person gives another person the authority to make personal care decisions on their behalf if they become mentally incapable. Capacity or Mental Capacity Under Ontario’s Health Care Consent Act, a person is capable with respect to a health care decision if they understand the information that is needed to make a decision and appreciate the consequences of the decision or lack of decision. Capacity is issue- or task-specific. A person’s specific capacity to understand information and appreciate the decisions that must be made should be respected so that their abilities are recognized. A person may be capable with respect to making some health care decisions but incapable with respect to others. A person may also be capable of making a health care decision at one time but incapable at another time. If a person is incapable with respect to making a health care decision about a treatment or plan of treatment, the substitute-decision maker can give or refuse consent on the person’s behalf. Community Treatment Order “Community treatment order” refers to a legal order, issued by a physician, to provide a comprehensive plan for community-based treatment or care to a person with a serious mental illness who has had difficulties maintaining their mental health in the community. Informed by a community treatment plan, the order outlines the medications, medical appointments, and other aspects of care the physician believes are necessary to allow the person to stay well in the community, rather than remain in hospital. The plan may include, but is not limited to, the treatments outlined in this quality standard. A community treatment order is developed by the physician in collaboration with the person receiving treatment or their substitute-decision maker, if applicable, and any other people or organizations that will assist the person in the community. A community treatment order is only valid if the person, or their substitute decision maker, provides consent. Ontario’s Mental Health Act defines the criteria necessary to issue and renew a community treatment order.

Why This Quality Standard Is Needed

Schizophrenia is a severe, chronic mental health condition that usually begins in late adolescence or early adulthood. The symptoms of schizophrenia can be categorized as positive, negative, or cognitive. Positive symptoms include hallucinations, delusions, and disorganized speech and behaviour. Negative symptoms include apathy, social withdrawal, emotional flatness, and a restriction in the amount and content of speech. Cognitive features include problems with memory, attention, planning, and organizing. In Canada, about 1 in 100 people have schizophrenia. A 2012 report identified schizophrenia as one of the five mental health and addictions–related conditions with the greatest impact on the life and health of people in Ontario. The risk of developing schizophrenia is influenced by a combination of genetic, physical, psychological, and environmental factors. The risk is higher in men, in people living in cities, and in families of recent immigrants. People with schizophrenia die about 15 to 20 years earlier than the general population, with the majority of these premature deaths resulting from cardiovascular or chronic respiratory disease. People with schizophrenia are also much more likely to die by suicide compared with people without schizophrenia. In addition, people with schizophrenia have an increased risk of having other psychiatric conditions, including substance use disorders, depression, and anxiety. They are also more likely to experience trauma, homelessness, and unemployment. People with schizophrenia face important gaps in the quality of care they receive in Ontario. Only 25% of people who are hospitalized for schizophrenia or psychosis receive a follow-up visit with a physician within 7 days, and people hospitalized for schizophrenia have a high rate (12.5%) of readmission within 30 days of discharge. Rates of emergency department visits for schizophrenia vary widely across the province. Access to psychiatrists also varies across Ontario: in 2009, the number of psychiatrists per 100,000 people ranged from 7.2 to 62.7 per 100,000 individuals across Ontario’s 14 local health integration networks. People with schizophrenia are disproportionately affected by homelessness, and are often precariously housed. About 520,700 people living with mental illness are inadequately housed in Canada and, of those, as many as 119,800 are homeless. People with schizophrenia are overrepresented in these populations: it is estimated that 6% of the homeless population in Toronto has schizophrenia. The 15 quality statements that make up this standard provide guidance on high-quality care and offer accompanying indicators to help health care professionals and organizations measure the quality of the care they provide. Each statement includes details about its effect on people with schizophrenia, their families and caregivers, health care professionals, community service providers, health care services, and community support services at large.

Principles Underpinning This Quality Standard

This quality standard is underpinned by the principles of respect, equity, and recovery. As described by the Mental Health Commission of Canada, “recovery refers to living a satisfying, hopeful, and contributing life, even when a person may be experiencing ongoing symptoms of a mental health problem or illness.” The commission elaborates that “recovery journeys build on individual, family, cultural, and community strengths and can be supported by many types of services, supports, and treatments.” People with schizophrenia have the right to receive services in an environment that promotes hope, empowerment, and optimism, and that embeds the values and practices of recovery-oriented care. Many intersecting factors—including biological, psychological, social, economic, cultural, and spiritual considerations—may affect a person’s mental health and well-being. People with schizophrenia and their families, caregivers, and personal supports should also receive services that are respectful of their rights and dignity, and that promote shared decision-making and self-management. Further, people should be empowered to make informed choices about the services that best meet their needs. People with schizophrenia should engage with their care providers in informed shared decision-making about their treatment options. Each person is unique and has the right to determine their own path toward mental health and well-being. Homelessness and poverty are two examples of economic and social conditions that influence people’s health, known as the social determinants of health. Other social determinants of health include employment status and working conditions, ethnicity, food security and nutrition, gender, housing, immigration status, social exclusion, and residing in a rural or urban area. Social determinants of health can have strong effects on individual and population health; they play an important role in understanding the root causes of poorer health. People with a mental illness or addiction often live under very stressful social and economic conditions that worsen their mental health, including social stigma, discrimination, and a lack of access to education, employment, income, and housing. People with schizophrenia often also encounter beliefs and attitudes that stem from negative stereotypes about mental illness. Stigma, or the perception of stigma, can negatively affect a person’s recovery, their ability to tell friends and family about their illness, and their willingness to seek help. Stigma may also impact a person’s ability to access health care services. People with schizophrenia should be provided services that are respectful of their gender, sexual orientation, socioeconomic status, housing, age, background (including self-identified cultural, linguistic, ethnic, racial, and religious backgrounds), and disability. Equitable access to the health system also includes access to culturally safe care. Language, a basic tool for communication, is an essential part of safe care and needs to be considered throughout a person’s health care journey. For example, in predominantly English-speaking settings, services should be actively offered in French and other languages. Services also need to be responsive to the specific needs of people who are marginalized, underserved, or members of other at-risk subgroups (e.g., lesbian, gay, bisexual, transgender, and queer or questioning populations; immigrant, refugee, and racialized populations; specific cultural groups; or survivors of sexual abuse or violence). While this quality standard addresses care for people who have already been diagnosed with schizophrenia, the importance of having responsive services that ensure all Ontarians with schizophrenia can receive a diagnosis cannot be understated. Care providers should be aware of the historical context of the lives of Canada’s Indigenous peoples and be sensitive to the impacts of intergenerational trauma and the physical, mental, emotional, and social harms experienced by Indigenous people, families, and communities. A high-quality health system is one that provides good access, experience, and outcomes for everyone in Ontario, no matter where they live, what they have, or who they are.

How Success Can Be Measured

The Schizophrenia Care in the Community Quality Standard Advisory Committee identified a small number of overarching goals for this quality standard. These have been mapped to indicators that may be used to assess quality of care provincially and locally.

How Can Success Be Measured Provincially

Percentage of adults hospitalized for schizophrenia who have had an unplanned hospital readmission for a mental health or addictions condition within 30 days of discharge (Data source: Discharge Abstract Database, Ontario Mental Health Reporting System)
Percentage of adults hospitalized for schizophrenia who had contact with a trained mental health physician:
- Within 7 days of hospital discharge
- Within 28 days of hospital discharge (Data sources: Discharge Abstract Database, Ontario Mental Health Reporting System, Ontario Health Insurance Plan Claims Database)

How Can Success Be Measured Locally You may want to assess the quality of care you provide to people with schizophrenia. You may also want to monitor your own quality improvement efforts. It may be possible to do this using your own clinical records, or you might need to collect additional data. We would recommend the following list of potential indicators, all of which cannot be measured provincially using currently available data sources:

Percentage of adults with schizophrenia who report unmet care needs (suggested stratification: type of need) (Data sources: Ontario Common Assessment of Need or local data collection)
Percentage of adults with schizophrenia who report living in stable housing for the past year (Data source: local data collection)
Percentage of adults hospitalized for schizophrenia who had contact with a trained mental health professional:
- Within 7 days of hospital discharge
- Within 28 days of hospital discharge (Data source: local data collection)

In addition, each quality statement within the standard is accompanied by one or more indicators. These indicators are intended to guide the measurement of quality improvement efforts related to the implementation of the statement. To assess the equitable delivery of care, the quality standard indicators can be stratified by patient or caregiver socioeconomic and demographic characteristics, such as income, education, language, age, sex, and gender.

What Does It Mean for Patients and Caregivers?

“I think this quality standard will bring people with lived experience and their family members hope. It will help them understand that there are more services available to them than they might know about. They will know that there are therapies that complement or even minimize medication use and that a diagnosis of schizophrenia does not have to mean hospitalization. There are other options and services that can help people with schizophrenia recover from acute episodes and live good, meaningful lives. When people get the right support in the community at the right time, they get well and stay well.”

- Sheryl Pedersen, Lived Experience Advisor on Schizophrenia Care in the Community for Adults Quality Standard

What Does It Mean for Providers?

“When it comes to providing care in the community for individuals living with schizophrenia, there are no standards of practice. This leads to situations where people fall through the cracks, and ultimately only make contact with health care professionals after they have been left untreated for long periods of time. This quality standard will help the health care system address these gaps so that providers are available and accessible to deliver the right care at the right time for individuals living with schizophrenia.”

- Sylvain Roy, Neuropsychologist, Inner City Family Health, Quality Standard Advisory Committee Member for the Schizophrenia Care in the Community for Adults Quality Standard

Timeline for This Quality Standard

This quality standard was completed in October 2018.

Evidence to Improve Care