Patient Perspective on Telehealth

In May 2020, I began experiencing signs of AKI in my first kidney transplant. I spent approximately 2 weeks in the hospital for rejection treatment and a blood transfusion because of severe anemia. The coronavirus disease 2019 (COVID-19) shutdown meant I could not have my partner or caregiver with me, forcing me to face this challenge alone. The nurses and doctors would come in personal protective equipment every time they entered my room until my trash can overflowed with disposable gowns and gloves. Although I could leave my room for short walks, fear of coronavirus disease exposure, especially knowing others in my ward were infected, I declined.

This “sterile isolation” brought on profound loneliness, fear, anxiety, and helplessness. I am deeply grateful for the care provided by my medical team during and after this stay. However, I often felt like a specimen under a microscope when my medical team, in full personal protective equipment and face shields, stood over me. My hospital experiences remained unchanged until after my second kidney transplant in November 2021. After this surgery, I spent 4 days in the intensive care unit, isolated from my mother and significant other, during a time when I needed their support the most.

Patients with kidney disease often require in-person consultations. As a veteran, I accessed care at a military medical facility, a two-and-a-half-hour drive from my home before 2021. This often meant a total commute of 5–6 hours for significantly shorter appointments, causing both physical and financial strain. For morning appointments, I had to start driving before sunrise to arrive on time. By the time I returned home, I was too exhausted for anything else that day. If I could not drive, my partner would have to take time off work. Consequently, I was limited to freelance work, unable to fully commit to my business. After my transplant, I was fortunate to stay at the Fisher House during my recovery. The thought of enduring a daily commute during that time is unimaginable to me.

Now, I primarily use telehealth to minimize in-person visits. Through Veterans Affairs (VA), I connect with health care providers through a computer or the VA Video Connect app on my phone or tablet. This has reduced my waiting time for appointments and alleviated the anxiety I typically felt for in-person visits. Being immunosuppressed, I feel safer accessing care from home, especially because mask-wearing is no longer mandatory in medical facilities. Although my commute to the VA hospital is now just an hour round trip, I am thankful for the reduced frequency of these commutes.

I hope more nephrology clinics and dialysis centers will evolve from status quo practices and adopt telehealth for its numerous benefits: convenience, fewer commutes, more frequent interactions with physicians, improved care coordination, greater engagement than phone calls, and risk mitigation for immunocompromised patients. A study on video-based telemedicine for kidney disease care was conducted in 2021, and it reported improved efficiency with telemedicine, including a reduction in the waiting time to see a specialist, fewer clinic cancellations, and a reduction in travel time and distance traveled; patient satisfaction was high for video-based care (>95%), with most patients perceiving it to be the same level of care compared with being seen in person.¹

Ensuring telehealth access for everyone, including those in rural and underserved areas, is crucial. Based on a survey conducted by the American Association of Kidney Patients' Center for Patient Research and Education in 2021 identified key takeaways on what kidney patients were doing to remain safe during COVID-19. More patients were asking their doctors about therapies that fit their safety regimen, like home hemodialysis (HHD) and peritoneal dialysis (PD) because home dialysis is more convenient (47%) and it is safer to social distance when on a home therapy (53%). The survey found an increased use of telehealth/telemedicine, by transplant patients (63%) and dialysis patients (35%) in response to the pandemic. Even 39% of healthcare professionals who took part in the survey shared they started using telehealth/telemedicine services for their patients' appointment(s) in response to the pandemic. In another interesting study from 2018 (prior to the pandemic), researchers wanted to determine whether adherence to appointments and outcomes would change if patients received “telenephrology” instead of traditional in-person care. Before implementing the telenephrology service, 53.1% of scheduled visits of rural Hudson Valley VA Medical Center patients to the Bronx Veterans Affairs Medical Center renal clinic were either canceled or were “no-shows.” This was reduced by nearly half (28.5%) after instituting telenephrology (P < 0.001). Moreover, the frequency of attending appointments was greater in the telenephrology (71.9%) versus in-person Bronx VA cohort (61.0%).³ This shows that the integration of telenephrology has the potential to transform our experiences from ones marked by long, exhausting journeys for short appointments and heightened exposure risks to more frequent, efficient, and safer interactions with our health care providers. These studies are powerful reminders of why patient care choice and access to patient-centered medicine — as opposed to system-centered medicine — empowers patients to exercise greater control and responsibility for their health outcomes.

My kidney journey of receiving two transplants and subsequent care has highlighted the invaluable role of telehealth in modern health care for patients with CKD. The isolation and challenges I faced during my in-hospital treatments were profound, yet they also underscored the need for accessible, compassionate care during the pandemic that respects both the physical and emotional well-being of patients. Telehealth, as I have experienced, offers a bridge over the logistical and emotional gaps that less evolved kidney care often presents. It is not just about patient convenience; it is about creating a health care delivery system that is responsive to patient needs and not simply anchored to the preferences or comfort zones of health systems and providers.

For veterans like me, and indeed for all patients facing similar health battles, the integration of telehealth into our care regimens has been a game changer. Telehealth is not just a temporary fix or a convenience tool; the lessons of COVID-19 have taught us that it was a long-overdue evolution within our healthcare system that delivered more personalized care for patients. As we move forward, embracing and expanding telehealth services will not only make health care more accessible but also more compassionate, resonating with the needs of patients who are often at their most vulnerable.

Disclosures

J.L. Jones reports the following: Advisory or Leadership Role: Not paid: Baxter Hemodialysis Patient Round Table; Center for Dialysis Innovation Patient Advisory Board; Kidney Precision Medicine Project Community Engagement Committee; Member of Bayer Patient Advisory Board for Clinical Trial; Vice President of the American Association of Kidney Patients; Paid: New York University Langone Community Advisory Board; and Other Interests or Relationships: Kindness for Kidneys; National Patient and Family Engagement Learning and Action Network Health Equity Committee; Patient and Family Advisory Council of Quality Insights Renal Network 5; Veterans Transplantation Association.

Funding

None.

Author Contributions

Writing – original draft: Jennifer L. Jones.

Writing – review & editing: Jennifer L. Jones.