Improving Communication during Outpatient Visits with Adults with Developmental Disabilities

By: Garima Methi, MD; Julie Brennan, PhD; and Svitlana Zhukivska, MD

Reprinted from the spring 2019 issue of The Ohio Family Physician.

Developmental disabilities are chronic mental and/or physical disabilities resulting in significant functional limitations in at least three areas including self-care, learning, mobility, receptive and expressive communication, self-direction, capacity for independent living, or economic self-sufficiency.

Common diagnoses associated with developmental disabilities include cerebral palsy, intellectual disability, autism, and epilepsy and the prevalence is increasing for many disorders. These diagnoses manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. The life expectancy of most people with developmental disabilities now approaches that of the general population resulting in many more adults living with developmental disabilities.

Individuals with intellectual and developmental disabilities (IDD) have a greater need for health care; however, disability has been found to be a risk factor for dissatisfaction and disappointment with clinician encounters. They are also more at risk for developing chronic physical and mental conditions, are less likely to receive preventive care, and have poorer health outcomes. Many physicians and other health care professionals lack training regarding how best to provide health care services to this population with the goals of improving patient wellbeing, function, and participation within their families and communities. Family physicians can play a critical role in improving the health of this population and decreasing health disparity.

Before the Appointment
It may be helpful to identify if there are any health or other records that could be obtained to best understand the specific individual, their disability, health history, and treatment goals or action plans. It is also helpful to identify if a support worker or caregiver is accompanying the patient and have a brief encounter sheet completed by the patient, the caregiver, or both of them together depending on the severity of the disability.

Information included could be a list of medications, allergies, and reason for the visit, along with current symptoms and functioning, treatments tried, and results of any treatment provided. Tools that can be used to have patients and/or caregivers prepare for the visit; examples are Today’s Health Care Visit, the Advocacy Skills Kit (Ask) Help Diary, and Today’s Visit.

Establishing Rapport
A person-centered approach (the patient is the center of communication) to care of adults with IDD can positively affect their health and wellbeing. Physicians should communicate directly with all of their patients, independent of patient’s ability to reciprocate. Communication may include speech, sign language, writing, letter boards, voice output devices, pictures, facial expressions, gestures, vocalizations and behavior. If a caregiver or support worker accompanies the patient, it is important to understand the role the patient wants this person to have in the appointment. Always and especially in individuals with severe or profound intellectual disability, it is essential to build trust with the caregiver-patient team.

During the Appointment
It is important to obtain a comprehensive history of baseline cognitive, communication, neuromuscular, and sensory function including vision, hearing, sensory processing, seizure threshold, mental health, and behavior. If possible, the patient should be planning and making decisions regarding care. This can be assessed using a tool that has been adapted for adults with IDD such as the decision making checklist. If help is needed, assisting patients with communicating their wants and needs is a good alternative to guardianship or power of attorney.

Routine periodic health screening and counseling regarding healthy lifestyle behaviors should be offered to patients with IDD just as it is for other adults. Additionally, psychiatric conditions should not just be assumed as part of the developmental disability and often can be treated with accurate diagnoses. Patient with developmental disabilities should have access to a full range of life-sustaining, curative, and end-of-life services.

Supporters are helpful in a variety of ways. They can provide ancillary information, translate or interpret unclear speech or nonverbal communication, and break down concepts in a way the patient can understand. They can also report back if the patient needs time to process information outside of the appointment or help implement the health care plan. It is critical to establish rapport and build trust with the patient-caregiver team to improve the effectiveness of patient care and improve collaboration and coordination.

After the Appointment
Family physicians, as leaders of the health care team, can help coordinate care with other members of the health care team and help with health information exchange.

Best Practices in Communication for Individuals with Developmental Disabilities

• Be aware of the environment and try to limit noise and distractions.
• Address the patient first and orient yourself in a way that allows you to maintain eye contact with the patient; however, respect the preference to avoid eye contact in individuals with autism and related disorders.
• Introduce yourself as the physician and greet the patient before consultation. Non-verbal communication like smiling, eye contact, and handshaking is possible in those who do not respond verbally.
• Practice triadic communication – address the patient directly regardless of severity of disability and use the caregiver to help facilitate the communication and not as a surrogate for communication.
• Always begin your interview by explaining the purpose of the encounter and establish communication preferences.

• Identify them as someone who knows the patient well, who will attend health care appointments, help to coordinate care, and monitor ongoing health and social needs.
• Tell them you will speak directly to the patient, but ask them to fill in gaps, if needed, when you look at them.
• Prompt caregivers to bring copies of medical records, a list of medications, and a list of questions they may have. This will facilitate the history-taking process and provide more time to address their concerns.

• Use short sentences and clear, age appropriate language. Try to be careful not to allow the communication to be misconstrued as patronizing.
• Provide clear explanations and confirm by asking the patient to repeat the key points. Use pictures, diagrams, and drawings.
• Consider using assistive communication devices or interpreters, if needed.
• Allow for additional time and support to meet individual needs. It may be helpful to schedule them as the first or last appointment of the day.
• Tell, or show, the patient what you are going to do in the physical exam.
• A patient’s perspective may differ from that of their family members, supporters, or other physicians. It is imperative to gather information directly from the patient as much as possible as only they can report on their internal symptoms and thoughts.
• Assume competence. They may understand more than they can demonstrate.

References available on the OAFP website.