Survey: Sickle Cell Disease Caregivers Distressed During COVID-19 Pandemic

December 11, 2021
Kevin Kunzmann

An ongoing assessment of caregivers considering hydroxyurea initiation for children with sickle cell disease provides a look into how such families are handling telemedicine and the pandemic.

COVID-19 has significantly impacted the rate of routine care visits for patients with sickle cell disease, according to new findings.

In data from the Engage-HU trial, presented at the American Society of Hematology (ASH) 2021 Annual Meeting in Atlanta this weekend, a team of investigators found that caregivers for pediatric patients with sickle cell disease have experienced notable distress during the pandemic. The team also found a correlation between older caregiver age, increased COVID-19-related distress, and a lack of satisfaction with telemedicine practices borne out of social distancing during the pandemic.

Led by Anna M. Hood, PhD, of the Developmental Neurosciences at University College London Institute of Child Health, the US- and UK-based investigators conducted the randomized, controlled Engage-HU trial to compare 2 dissemination methods for clinicians facilitating shared decision-making with caregivers of young children with sickle cell disease.

Specifically, the trial is designed to address barriers to hydroxyurea, the primary therapy used to prevent medical and neurologic morbidities associated with pediatric sickle cell disease.

“Despite the benefits of hydroxyurea, it remains under‐utilized likely due to lack of clinician knowledge/training and negative caregiver perceptions,” investigators wrote. “Engage-HU is designed to assess how clinicians can engage caregivers in a shared discussion that considers their values, preferences, and scientific evidence about hydroxyurea.”

As COVID-19 has created significant changes to pediatric sickle cell disease care delivery models, clinicians are recommended to conduct telehealth visits with the high-risk population whenever possible. Hood and colleagues noted that some families also delayed care for their child out of fear of SARS-CoV-2 infection risks from visiting medical centers and clinics.

“Since the lives of all families enrolled in the Engage-HU trial have been affected to some extent, we incorporated measures to capture the impact of the COVID-19 pandemic and the usability of telemedicine implementation and services,” they wrote.

Investigators seek to recruit 174 caregivers who are considering initiating hydroxyurea for their children with sickle cell disease for the Engage-HU trial. Recruitment is occurring at 9 different US sites, with 160 caregivers enrolled at the time of ASH 2021 presentation. Eligible children for assessment are 0-5 years old, candidates for hydroxyurea, and with caregivers who have not decided on initiating the therapy in the last 3 months.

The trial’s primary endpoints are caregiver uncertainty and perception of shared decision-making with their child’s clinician via validated tools; Hood and colleagues are analyzing data with the intent-to-treat (ITT) principle. A multiple group comparison analysis of the randomized arms will be performed to analyze the significant response variable differences.

Enrolled caregivers have also completed the COVID-19 Exposure and Family Impact Scales (CEFIS) survey, as well as a COVID-19 telemedicine use survey to assess exposure of potentially traumatic aspects of the pandemic and perception of telemedicine, since May 2020.

The ASH 2021 data included 48 caregivers from 8 of the 9 sites; 93.8% of caregivers were mothers, and 93.8% identified as African American/Black. CEFIS data showed a correlation between older caregivers and greater exposure to potentially traumatic aspects of COVID-19, while distress related to the pandemic varied widely across both caregivers and their children.

The telemedicine usability survey indicated sickle cell disease caregivers are generally happy with the quality of care delivered via remote care. That said, investigators did notice another correlation between greater pandemic-related distress and less reported satisfaction with telehealth.

While Engage-HU has not yet reached pre-pandemic targets for recruitment, the ongoing assessment does provide early takeaways of the perceived impact of COVID-19 on both pediatric sickle cell disease patients and their caregivers.

“Our preliminary analyses suggest a significant continued impact of the pandemic on families and general satisfaction with the quality of healthcare delivered via telemedicine,” Hood and colleagues concluded. “These findings indicate that targeted screenings to identify and intervene for those who demonstrate more COVID-19 pandemic-related distress are needed.”

The study, “Effects of the COVID-19 Pandemic on Caregivers of Young Children with Sickle Cell Disease Enrolled in the Engage-HU Trial,” was presented at ASH 2021.


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