Dual diagnosis in primary care: Ongoing care​

The primary care provider role

The primary care provider is responsible for managing the overall health care of the patient. The primary care provider's practice acts as the patient's medical "home," receiving summaries of all interactions and consultations within the medical system.

Guidelines and tools to help primary care providers identify and treat physical issues faced by people who have a developmental disability are available from the Developmental Disabilities Primary Care Initiative.

Ongoing care of the patient with dual diagnosis

Families often go to their primary care provider first when the patient or caregiver is concerned about a mental health issue or the patient is in crisis.

As the primary care provider–patient relationship evolves, the primary care provider's role may include:

• medical assessment
• referral medical management
• proactive crisis planning.

First appointment with a patient

Adults with developmental disabilities need the same access to health care as anyone else. Decisions about health interventions should consider not only medical benefits and risks, but also the patient's particular needs and circumstances.

Adults with developmental disabilities should have the opportunity and support they need to participate in making informed health care decisions. People with developmental disabilities are nurtured throughout life by human relationships, so their relationships with primary health care providers are essential foundations for optimal health care. Relationships with their families and other support networks require respectful consideration because these people can provide clinically relevant information and resources to primary health care providers.

Tools

• Office Organizational Tips (Developmental Disabilities Primary Care Initiative) discusses general office preparation, the initial office appointment, follow-up visits, preparing for exams and procedures and making referrals. 
• Today's Visit (Developmental Disabilities Primary Care Initiative) is a form where the patient and caregivers describe the reason for the visit and list changes to the patient's health status, and the primary care provider notes changes to the treatment plan.

Capacity to consent to treatment

As part of the patient's care team, the primary care provider is responsible for assessing whether the patient with a developmental disability is capable of consenting to treatment.

Eligibility for services

Most treatment and support programs require that a person has a formal diagnosis of developmental disability in order to be eligible for services.

For example, adults accessing services through Developmental Services Ontario must have an assessment by a psychologist in order to confirm a developmental disability diagnosis.

The Primary Care of Adults with Intellectual and Developmental Disabilities: 2018 Canadian Consensus Guidelines provide recommendations around determining etiology and functional capacity.

Tools

• Psychological Assessment: Frequently Asked Questions (Developmental Disabilities Primary Care Initiative)

Investigating behavioural issues

The onset or escalation of behavioural problems in a person with a developmental disability may be caused by medical conditions, changes in the person's environment, emotional issues and psychiatric disorders.

Clarify the cause of the behavioural problems. Assess and manage sequentially:

• medical issues
• supports and expectations
• emotional issues
• psychiatric disorders.

If this analysis identifies a potential mental health problem, you may need to refer the patient to a specialized clinical program for assessment and other clinical services.

Psychotropic medications

In general, psychotropic medications should only be prescribed after a careful assessment has been conducted and a psychiatric diagnosis is highly suspected.

People with developmental disabilities can be very sensitive to changes in medications. Medications given to calm the person may have pardoxical effects. Be aware of this challenge, as well as potential medication interactions and instruct caregivers on what to monitor, on the effect the medication should have, and how quickly response should be evident.

Antipsychotic medications are often overprescribed in people with developmental disabilities. They have not been show to be effective for managing aggressive behaviours. Physicians considering medication as part of the immediate or longer-term management of problem behaviours in people with developmental disabilities should follow appropriate clinical guidelines.

The primary care provider is responsible for assessing whether the person with a developmental disability has the capacity to consent to medication or other treatment. If the person does not have the capacity to provide consent, the primary care provider should consult the substitute decision-maker.

Tools

• A Guide to Understanding Behavioural Problems and Emotional Concerns (Developmental Disabilities Primary Care Initiative)
• ABC (Antecedent-Behaviour-Consequence) Chart (Developmental Disabilities Primary Care Initiative)
• Auditing Psychotropic Medication Therapy (Developmental Disabilities Primary Care Initiative)
• Rapid Tranquillization of Adults with Crisis Behavours (Developmental Disabilities Primary Care Initiative)

Developing a crisis plan

The primary care provider should prepare a summary of essential information to be given to hospital emergency staff if the patient needs to go to the emergency department.

Preventing future crises

Following a crisis, the primary care provider should work with the patient, family and paid caregivers to development a plan for preventing and preparing for emergencies.

Reviewing and updating this plan after each crisis helps the care team and the patient to learn from the crisis and prepare for future crises. The plan should also be reviewed a regular intervals to reflect changes in the patient's physical, emotional and psychiatric health status and the supports and expectations in their environment.

Role of medications in an emergency situation

Medications may be needed on an emergency basis to manage symptoms while the root cause of the problem behaviour is being explored.

Tools

• Auditing Psychotropic Medication Therapy (Developmental Disabilities Primary Care Initiative)
• Crisis Prevention/Management Plan for Adults with DD (Developmental Disabilities Primary Care Initiative)
• Rapid Tranquillization of Adults with Crisis Behaviours (Developmental Disabilities Primary Care Initiative)

Continuing care

Primary care providers can refer to community-based supports and services and provide referral information to the patient's family.

Anticipating transitions

People with developmental disabilities, especially autism spectrum disorders, have a hard time with change. Even a seemingly minor unanticipated event such as a change in routine, staff or plans due to bad weather can be disruptive.

Primary care providers should discuss advance planning for major changes and transitions such as:

• starting school
• changing from child-based to adult-based systems of care
• changes in residence (e.g., moving from family home to group home, from one group home to another, from group home to long-term care).

Transition planning resources

• Health care transition tools and resources for families and caregivers of youth with DD (Developmental Disabilities Primary Care Initiative) 
• Connections: A Guide to Transition Planning for Parents of Children with a Developmental Disability
• Youth in Transition Guide: Developed by the Community Networks of Specialized Care
• Passport Guidelines: Ontario Ministry of Community and Social Services initiative for young people who have left school and are seeking community participation supports
• The Ontario Partnership on Aging and Developmental Disabilities publishes resources, including the Blueprint for Transition Planning and a Transition Guide for Caregivers.

Evidence summary: Psychotropic medications

Deb, S., Kwok, H., Bertelli, M., Salvador-Carulla, L., Bradley, E., Torr, J. & Barnhill, J. (2009). International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry, 181–186.

Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S.,... Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. The Lancet, 371, 57–63.