Standard of care for individuals with inherited bleeding disorders includes an annual in person multi-disciplinary comprehensive visit at the Hemophilia Treatment Center (HTC). During the COVID-19 pandemic in person visits were restricted, with mandates to only schedule in person urgent visits and to "stay at home." In order to provide annual visits to as many patients as possible, we developed a quality improvement (QI) project to conduct annual visits via telemedicine (TM), including nursing (RN), physician (MD), social work (SW), and physical therapy (PT) assessments. Our aim was to increase annual comprehensive clinic visits conducted by TM for eligible patients from 0 to 50% between April 1 and June 30, 2020, extended through July 31, 2020 due to the prolonged pandemic.

Patients due for an annual visit were contacted by medical assistants (MA) to schedule either a TM (through EPIC MyChart) or an in person visit. MAs were trained on which patients were eligible for a TM visit and how to set-up MyChart remotely. Prior to the visit patients were provided verbal, written, and video instructions on how to attend the TM visit. Quantitative and qualitative data were collected at the time of scheduling and during the visit.

Forty-eight patients were scheduled for an annual visit during the QI timeframe. TM visits were not offered to 28 patients for a variety of reasons (first comprehensive clinic visit, need to re-establish or transfer care, need for required laboratory testing, or joint disease requiring in person PT evaluation). Out of the 20 patients who were eligible for a TM visit, 14 (70%) accepted. The two main reasons for declining TM visits were personal preference for an in person visit and preference to not use/activate MyChart.

Table 1 compares the characteristics of patients who completed their annual visit via TM versus in person. Of the 14 patients who accepted TM visits, 11 completed the visit and 3 were no-shows. All four adolescent patients who attended their TM completed their annual transition questionnaire online prior to the visit. Of the 11 patients who completed TM visits, 4 (36.3%) saw the same providers during both their TM visit and in person visit the year prior. Of those who saw fewer providers during the TM visits, the most commonly missed providers were the dietician and genetic counselor. TM visits were primarily conducted through two-way audio and video communication within MyChart, while 1 was through Zoom and the other by audio only. Eight of the 11 (72.7%) TM visits had technical issues, including difficulty connecting to MyChart and poor internet connection requiring the remainder of the visit to be completed by audio only. Despite the technical issues, the majority of patients (81.8%) stated that they would prefer in person visits over TM visits in the future. The most common reasons for preference of TM visits in the future were convenience and ability to avoid the clinic during the pandemic. The HTC team members also perceived that TM visits ran more efficiently than the in person visits despite the technical issues during the visits.

For in person visits, families were pre-screened by phone and at the time of arrival for symptoms of COVID-19, exposures, and travel outside of US. Two patients only reported potential exposure/travel to the providers in the HTC clinic, which required isolation and use of additional personal protective equipment (PPE).

Overall, we increased the number of annual comprehensive clinic visits conducted by TM from 0 to 70% for eligible patients between April 1 and July 31, 2020 during the COVID-19 pandemic. Although there were technical difficulties with the TM visits, the majority of patients found the TM visit to be convenient and expressed a preference for TM for future visits. TM visits reduced potential exposures and use of PPE. Future interventions to improve TM visits include promoting MyChart utilization, additional education for patients regarding logistics of connecting to a TM visit, and additional education for providers regarding the troubleshooting of technical issues. Future QI measures may include patient satisfaction, duration of TM compared to in person visits, and need for additional care coordination post TM visit. In addition, impact on patient outcomes (such as need for return visits or bleeds) should also be evaluated.


Thornburg:Bluebird Bio: Consultancy; Biomarin: Consultancy, Speakers Bureau; Genentech: Speakers Bureau; NovoNordisk: Research Funding; Sanofi Genzyme: Consultancy, Other: Data Safety Monitoring Board, Research Funding; Spark Therapeutics: Consultancy; Ironwood Pharmaceuticals: Consultancy, Other: Data Safety Monitoring Board; National Hemophilia Foundation: Membership on an entity's Board of Directors or advisory committees, Research Funding; Bayer Pharmaceuticals: Research Funding; American Thrombosis and Hemostasis Network: Research Funding.

Author notes


Asterisk with author names denotes non-ASH members.