Caregivers Report Positive Telehealth Experiences, But Adults with SCD Need More Support

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In the results of a new study, although most people had positive views of telehealth, caregivers of individuals with sickle cell disease (SCD) were generally more satisfied and felt they had more resources than adults living with SCD. To make sure everyone has fair access to telehealth, investigators say it is important to understand what influences how well telehealth works for patients with SCD in different locations and situations.

As there are a limited number of SCD specialists who are trained and able to take care of these patients, coupled with the lack of in-person care during the COVID-19 pandemic, many visits have been transitioned to a telehealth setting during the past few years.

“The use of telehealth was initially poorly charted territory for both SCD providers and their patients, and the continuation of this approach, as the pandemic has moved into the endemic phase, remains variable,” wrote a team of investigators led by Marsha Treadwell, PhD, a professor in the Department of Pediatrics, Division of Hematology, at the University of California San Francisco School of Medicine. “Early studies showed telehealth to be successful for SCD symptom management, to increase access to care, and to be associated with high patient satisfaction.”

A total of 151 adult patients with SCD and 94 caregivers involved in the Pacific Sickle Cell Regional Collaborative (PSCRC) completed the 30-item Impact of COVID-19 and Telehealth online survey evaluating systems issues including reliable internet connectivity; the sharing of health information; and consumer factors, such as starting a doctor’s appointment on time. Relationships between independent variables and the outcome of overall satisfaction with telehealth were assessed using a multivariable logistic regression model.

The PSCRC is one of the Health Resources and Services Administration’s (HRSA) five Sickle Cell Disease Treatment Demonstration Programs (SCDTDP) and encompasses 13 states in the western United States including Alaska, Arizona, California, Colorado, Hawaii, Idaho, Montana, Nevada, New Mexico, Oregon, Utah, Washington and Wyoming.

PSCRC sites of care include adult, pediatric, lifespan-focused, academic and community facilities. Small care sites were defined as those treating fewer than 100 patients, while large sites were those that cared for more than 200 patients. Telehealth visits were defined as “medical consultation taking place remotely using technology,” with most switching to phone calls or video visits via Zoom.

According to participants surveyed, most patients were diagnosed with sickle cell anemia (60.8%) and most were treated with hydroxyurea (57.6%). Satisfaction with telehealth was very high among both groups (>90%), although more caregivers than adult patients gave the highest rating (60.6% vs 44.9%, respectively). Among the accessibility and technical issues assessed, more caregivers reported having home support for telehealth than did patients (80.9% vs 63.6%, respectively).

Patients who received care in larger centers were more likely to have the highest satisfaction in care than those who visited smaller centers. Patients and caregivers who needed help from a telehealth navigator were less likely to report the highest telehealth experience rating than those who did not need help.

Investigators noted limitations including being unable to use a pre/post-survey methodology, so there is a possibility that very different people may have participated in the current study compared with the initial PSCRC survey conducted in 2020. Additionally, as the survey was focused on the western region on the United States, findings may not be generalizable to other parts of the country.

“Telehealth shows promise to reduce healthcare inequities as populations with SCD have the opportunity to receive the healthcare they need and deserve, regardless of social or economic status, or geographic location,” investigators concluded. “However, we must remain vigilant that differences in digital literacy or access to technology do not, in fact, lead to increased disparities in access to comprehensive SCD care across all regions of the United States.”