Telemedicine and IDD: The Promise and Peril

By Carl Tyler MD, MSc, Lin Miao Peters MPH, Developmental Disabilities Practice-Based Research Network

The Covid pandemic accelerated the adoption of telemedicine in the care of adults with intellectual and other developmental disabilities (IDD). As the immediate crisis has passed, and the use of telemedicine has largely returned to the status of an option for health care rather than a necessity, patients, caregivers, and physicians are more carefully considering when and how telemedicine is best employed in the health care of adults with IDD.

Recently, one group of stakeholders took a deeper look. The Developmental Disabilities Practice-Based Research Network (DD-PBRN) is a collaborative of self-advocates, family members, support and service providers, health professionals and governmental representatives, whose aim is to improve the health and health care of people with developmental disabilities. 

The organization held two hour long virtual focus groups about telemedicine. Twenty one members participated and discussed the following questions:

1) Have you been involved in an optimal telehealth experience as a person with an IDD, support and service provider, family member, or health professional?  If so, what made the experience a good one? 

(2) Have you been involved in a sub-optimal telehealth experience as a person with an IDD, support or service provider, family member, or health professional?  If so, what made the experience a sub-optimal one?

The DD-PBRN director and research coordinator captured their ideas in real-time and here’s what they felt were the pros and cons. 

Observed Advantages of Telemedicine for Adults with IDD

For Patients

Less anxiety leads to better communication.

Specific Comments:  

• Less fear, anxiety, and distraction in the home environment, leading to less stress and enhanced communication.  

• Less potential for healthcare-related trauma.

For Caregivers

Fewer transportation and logistical hurdles free up time for other responsibilities.

Specific Comments:  

• Less convenience and logistical barriers to care.  

• Less burden with transportation to and from the physician's office. 

• Less likelihood of patient and staff injury when patient resists transportation to physician’s office. 

• Driver to the doctor's office may be unfamiliar to the patient but direct support staff in the home assisting with telemedicine are more likely to know the patient well.  

• Residences may be more physically accessible than healthcare facilities. 

 For Physicians:  Better communication leads to better information which leads to a better diagnosis.

Specific Comments:  

• Potential for more direct communication and more direct information from the patient, leading to more accurate diagnosis.  

• Potential for telemedicine to serve as more efficient and cost-effective triage.  

• Appropriate for less complicated care, follow-up care, with familiar patients.

Observed Disadvantages of Telemedicine for Adults with IDD

For Patients:  Technology barriers, privacy concerns, and less engagement with physicians.

Specific Comments:  

• Available technology may not be tailored to the patient's capacity.  

• Limited funds to pay for and use technology required for patients to engage in telemedicine.  Fewer trips away from residence, contributing to agoraphobia.  

• Higher risks to data privacy, potential for scamming, and financial exploitation. Loss of privacy when telehealth appointments happen in a common area of residence. 

• More distracted in the home environment. Failure to engage patient in video platform from the beginning of the encounter. 

• Lack of patient training in virtual training platforms.

For Caregivers:  Expectations for greater active involvement leads  to greater caregiver stress.

Specific Comments:  

• Concern about incomplete examinations, leading to inadequate assessments, delayed diagnosis and ineffective treatment.  

• More dependent on accurate description of illness by caregiver, without direct close observation by physician. 

• Decision to use telemedicine based on staff ease, not what is best for patient. 

• Lack of caregiver training in virtual platforms.

For Physicians:  Risks for diagnostic error and treatment harms, plus fewer preventive services.

Specific Comments: 

• Limited history and physical examination, plus failure to obtain critical vital signs.  

• Telemedicine appropriate only for some clinical scenarios; concern that telemedicine will be used inappropriately for other clinical scenarios.  

• Not appropriate for common clinical scenarios such as chest pain, abdominal pain, or dermatologic diagnoses.  

• Could lead to antibiotic overuse. 

• Use of telemedicine platforms by physicians totally unfamiliar to patient.  

• Potential for missed preventive care, such as immunizations.  Potential for excessive use of diagnostic testing (imaging, blood tests) because of less direct physical examination.  

• Homes may not have adjustable tables for examination.  

• If a directed exam that is conducted virtually at home is perceived as traumatic to the patient, then home may not feel safe anymore.  

• Lack of physician training in virtual platforms.