Autoinflammatory diseases arise through inappropriate activation of antigen-independent inflammatory mechanisms and can have a high morbidity as well as mortality burden. Many autoinflammatory diseases are rare and unlikely to be encountered in routine clinical practice.
Given the uncommonness of the disease, only a few centers/rheumatologists see a high volume of these patients, and often patients may have to travel long distances. Often the diagnosis is delayed for many years for these patients leading to worse disease and non-reversible damage. With the COVID-19 pandemic, the uptake of telemedicine with video conferencing has become exponential. While a lot of work needs to be done to improve access to telemedicine, physicians as well as patients are getting comfortable using these technologies.
Traditionally telemedicine is thought to be a technology where a patient directly talks to a provider or a specialist; however, another concept of having a patient with a local primary care who in turn accesses specialists via video conferencing, is gaining some momentum.
In a prospective study presented at #ACR21 (abstract #1062), researchers proposed such a telemedicine enriched auto-inflammatory disease care model. Here primary care providers caring for autoinflammatory disease patients with at least one autoinflammatory center visit were included and subsequently they could access an autoinflammatory specialist via video conferencing. Of the 115 primary care providers approached, response rate was 54% with the majority of participants being pediatricians–87%, 10% being family physicians and 3% being internal medicine physicians. More support from auto inflammatory disease experts was desired by 71% of the physicians and about 75% either felt very inexperienced or neutral about taking care of these patients. A majority of the physicians indicated a positive attitude towards this approach as measured by the Technology Acceptance Model.
This study demonstrated the feasibility and the uptake of close to patient’s home consultation by an autoinflammatory disease specialist. It also highlights that many primary care physicians who are often the point of contact for autoinflammatory disease patients are seeking guidance from specialists. Several rheumatologists would also benefit from access to an autoinflammatory disease expert for complicated cases, given the infrequency, multiple different presentations and usage of biologics that are otherwise not commonly used by rheumatologists.
Creative solutions to improve access of our patients with rare diseases may help early diagnoses, decrease complications and improve outcomes.