This is the first study to compare patients who utilized telemedicine for pediatric rheumatology during the public health emergency caused by the COVID-19 to patients who had in-office visits in the prior year. We found no change in no show rates with telemedicine compared to office visits. Percentage of new office visits in the office setting decreased from 83–60% in the telemedicine setting. This decrease in new patient visits could be due to various reasons. One potential reason could be that families decided to defer care during the beginning of the pandemic all together. Another potential reason could be that families did not believe telemedicine would be able to address their concerns. Families might have also been uncomfortable with trying to use telemedicine and instead deferred care until in-office visits resumed. Family preferences regarding telemedicine during the pandemic will require further study. Based on patient demographics such as distance from clinic, family’s annual income, patient age, and rural status, patients utilizing telemedicine during the pandemic were similar to those using office visits before the pandemic. The pandemic may have made families more amenable to trying telemedicine for the first time for their children with pediatric rheumatology concerns. However, families may have used telemedicine during this time out of necessity as in-office visits were not available, which could explain why demographics and patient characteristics were not significantly different compared to in-office visits over the previous year pre-pandemic.
With telemedicine visits offered during the COVID-19 pandemic, we were able to garner experience with its benefits and limitations. One advantage is that telemedicine allows for small children to be relaxed during the exam in the confines of their own home. Physicians can make a game out of the exam over audio-video communication by playing Simon Says. This setting also allows the physician the ability to get a general sense of the patient’s home environment when visits are conducted from the patient’s kitchen or living room. The downside to using audio-video communication is some limitations of the physical exam. An important aspect of the pediatric rheumatology exam is an examination of the joints including palpation, which can be done indirectly by training the caregiver how to assist. The telemedicine exam facilitates the physician to coach the caregiver as an assistant and makes the caregiver an active participant in the exam. The caregiver can help position the child, move the joints, and report the child’s pain level. In this way, the family has a more active role during the child’s visit.
The pediatric rheumatology group at Stanford Children’s has begun a multiphase pilot study that examines the clinical gap in video visits. From their preliminary data they have found that the rheumatologic physical exam, vital signs, modes of communication between provider and patient, need for immediate laboratory work or imaging, and the need for nursing or social work support are all barriers to the adoption of telemedicine when compared to the in-person clinic visits [14]. This describes the several barriers that physicians and patients encounter on the telemedicine platform that will need to be addressed.
In addition to some of the limitations that telemedicine can create, physicians will also have to become comfortable with the lack of formality telemedicine can engender. In our experience, some families arrived to their telemedicine visits in pajamas. Other visits were conducted with the child in the car with the parent driving. Clearer instructions about what to expect during the telemedicine visit should be given to families ahead of the visits. The patient-physician relationship has to be established on the screen. Optimizing this virtual relationship is something both patients and physicians will have to learn going forward together.
Technology barriers to telemedicine also remain. Patients are required to learn how to use the technology in order to participate in a telemedicine visit. There must be appropriate access to technology and internet for patients to participate, which in rural areas may be limited. Families may also have devices without camera capabilities, limiting their ability to utilize video communication further hindering the ability to try to conduct a physical exam virtually. It will be important to assess a family’s ability and comfort utilizing technology prior to a telemedicine visit. Patients in the future could also benefit from an instructional video on how telemedicine visits are conducted in order to set expectations and to show how the platform is operated. In our study, clinic patients were provided an instructional video prior to their visit on how to operate the telemedicine platform.
A recent article in Pediatric Rheumatology discussed the potential glitches with telehealth utilization during the COVID-19 pandemic, with one potential limitation being the inability to ask pediatric patients about psychosocial matters such as depression and smoking while a parent may be in the room or helping to operate the telehealth visit [15]. This poses another challenge with telehealth for providers who need to assess important psychosocial factors that may contribute to their patient’s disease or their compliance with treatment. This is important in pediatric rheumatology as many diagnoses are chronic and psychosocial factors should be assessed. Healthcare professionals will have to learn how to navigate these conversations over a screen in order to maintain the patient-provider relationship and the patient’s confidentiality.
A recent study in an Alaskan population assessed the outcomes and quality of care for rheumatoid arthritis in telemedicine. They found that telemedicine did not improve rheumatoid arthritis activity or quality of care over a 12-month period, however it was found that it was not inferior to in-person care. Perceptions of telemedicine were also addressed using a telemedicine perception survey. They found that individuals using telemedicine still expressed a preference to be seen in-person, however those using telemedicine were more likely to feel that the care given was as good as in-person visits. Both telemedicine patients and office visits patients felt that technical difficulties were a limitation to its use (16). This study suggests that telemedicine may offer another option of care to patients that is as good as in-person visits. This study also shows that those utilizing telemedicine have more positive perceptions about its use as an alternative method of care.
Further studies will need to ascertain patient satisfaction with telemedicine in pediatric rheumatology. The growth of telemedicine during the COVID-19 pandemic has rapidly transformed the way providers deliver care. Some families may feel more comfortable with telemedicine after trying it for the first time. Other families may feel most comfortable in the office setting only. It would also be important to understand why some patients may have deferred care during the pandemic and whether it was due to their perceptions about telemedicine. Exploring family preferences for modality of care will be an important area for future study.
Some valuable lessons were learned during the first three months of our telemedicine experience. Beyond the pandemic, telemedicine will have a place in pediatric rheumatology care where access issues persist. With less than 500 pediatric rheumatologists in the United States, there are still nine states lacking access to pediatric rheumatology care. If telehealth could be utilized further, than patient access could be enhanced across the country. This would include rural areas, underserved areas, and areas where families have to travel long distances to receive care. The Covid-19 pandemic is an event that will stimulate physicians to evaluate how they can expand care within a small subspecialty. More families may choose to try a telemedicine visit if given the option. The pediatric rheumatology workforce should be ready to embrace telemedicine as part of the future of serving the patient population. Learning a digital physical exam and interacting with families over video will be the new normal in many instances. How to best leverage technology for the care of pediatric rheumatology patients requires further study.