What you need to know
Researchers conducted a scoping review of studies that evaluated delivery of virtual health care for adults with intellectual and developmental disabilities (IDD) before and during the COVID-19 pandemic. In particular, they looked at the impact on access to care. They identified 22 studies, of which 12 reported results related to access to care.
Overall, this search identified relatively few studies and most were small pilot studies, which limited the conclusions that the researchers could draw from this review. However, the results suggest that it is possible to deliver accessible, high quality virtual care for patients with IDD. Accessibility may depend on the needs and capacities of the patient, the supports that are available, the environment in which they receive care and the type of health care that is provided.
What is this research about?
In response to the COVID-19 pandemic, many health care services moved to virtual delivery. Given this unprecedented increase in virtual care, it is important to consider the potential impact on quality and access to care for different patient groups, including adults with IDD.
The aim of this study was to review what is already known about virtual health care for adults with IDD and, in particular, the impact of virtual delivery on access to care for this population.
What did the researchers do?
The researchers conducted a scoping review of studies that evaluated delivery of virtual health care for adults with IDD. The search included academic research papers as well as grey literature, such as reports, policy and working papers, and government documents.
The review used the Ontario definition of developmental disabilities, which includes people with intellectual disabilities and other conditions that impact cognitive and adaptive functioning that start in childhood, persist throughout the person’s lifespan and affect areas of major life activity.
The researchers defined health care broadly to include any health related service, such as physical health care, psychotherapies and psychosocial interventions. Virtual delivery was defined as any remote interaction that involved phone, video and/or text exchange.
What did the researchers find?
Relatively little research has been conducted on this topic. Most of the research on virtual care and people with IDD has focused on children and only 22 studies were identified that included adults. Most of these were small pilot studies and most focused on services delivered by specialists in the field of IDD.
Twelve of these 22 studies reported results related to access to care. The researchers analyzed the findings for these 12 studies using the Levesque Access to Care Framework, which identifies five dimensions of service accessibility:
- acceptability (patient satisfaction or comfort using the service)
- availability and accommodation (patient ability to use the service)
- appropriateness (quality of the service)
- approachability (patient awareness of the service) and
- affordability (cost of the service).
Patient comfort or satisfaction with virtual care (acceptability)
Most studies reported positive feedback from patients and caregivers on the acceptability of virtual services, although some participants preferred face-to-face interactions. Exceptions to this trend were three studies conducted during the pandemic. These studies reported more mixed findings, including some patients and caregivers who reported low benefit or felt that virtual care was rushed and impersonal.
Patient ability to use virtual care (availability and accommodation)
The researchers found that, in some cases, virtual care could saved travel time and reduced challenges for patients who could not tolerate waiting in the waiting room and/or social distancing. The most common challenge related to this domain was technical issues using the virtual platform.
Important factors in a successful virtual care interaction included the presence of a support person, good quality internet and having a quiet and private space to participate.
Quality of virtual care (appropriateness)
The findings for this domain generally showed that virtual health care interventions could be delivered successfully to patients with IDD. Some even identified advantages to virtual care over in-person visits, for example, by allowing providers to see how patients functioned in their home environment.
Some studies also raised concerns related to quality of care. This included health care issues that might be missed in the absence of physical exams and the increased likelihood that virtual health care interactions might be dominated by the caregiver, excluding the patient from their own care.
Overall, the studies addressing quality had small samples, limiting evidence for drawing broader conclusions on the efficacy or effectiveness of virtual care.
Patient awareness of the service (approachability) and cost of the service (affordability)
None of the studies identified in this review reported findings related to approachability or affordability. The researchers noted that this is a substantial gap in the literature that must be addressed by future research.
Limitations of the research
The researchers noted that although they tried to develop a broad search strategy, relevant articles they might have missed relevant articles. Also, the review was limited to articles published in English, so relevant articles in other languages might also have been missed. Finally, the researchers intended their review to be exploratory and comprehensive, so they did not conduct a formal quality assessment of the studies.
How can you use this research?
Adults with IDD are already an underserved population and it is important that their needs be considered as health care shifts towards virtual approaches. Health care providers delivering virtual care should be aware that virtual care might be appropriate for some patients with IDD and not others. Patient’s ability to access virtual care may depend on their health care needs, communication style and ability, available support, and living environment.
Relatively little research has been conducted on this topic. More research is needed to better understand which patients, under which circumstances can benefit from virtual care, and what supports patients need when receiving virtual care.
About the researchers
Avra Selick,1,2 Nicole Bobbette,2,3 Yona Lunsky,1,2 Yani Hamdani,1,2 Jennifer Rayner,1 Janet Durbin1,2
- University of Toronto, Toronto
- Centre for Addiction and Mental Health, Toronto
- Queen's University, Kingston, ON