Understanding Caregiver Burden with Accessing Sickle Cell Care and Their Perspective on Telemedicine

Background: Sickle cell disease (SCD) is associated with a wide range of complications. However, a multitude of barriers prevent SCD patients from receiving adequate healthcare, including difficulties with transportation and lack of provider knowledge about disease sequelae. Importantly, studies have demonstrated the benefits of telemedicine in addressing barriers to healthcare. Few studies have explored barriers which affect the pediatric SCD patient population in areas such as the Midwest, wherein the geographical landscape can prohibit healthcare access. Furthermore, few studies have established acceptability of telemedicine among caregivers and patients with SCD. The objective of this study was to increase understanding of barriers to care and perceptions of telemedicine by caregivers of pediatric SCD patients.

Methods: An 88-item statewide survey was distributed to caregivers of children with SCD cared for at Riley Hospital for Children in Indianapolis, IN. Caregivers were contacted by the research team via secure text messaging or in-person. Questions for the survey were developed based on previously performed semi-structured interviews with caregivers and the validated Barriers to Care Questionnaire (BCQ). The survey included questions regarding their experience accessing care, including barriers and facilitators of care, as well as their perspective on the use of telemedicine in SCD. Responses were analyzed using t-tests or chi square tests where appropriate.

Results: Of the 300 caregivers contacted, 101 completed the survey, resulting in a response rate of 34%. The majority had 1 child with SCD, with most having Hb SS genotype. Eighteen percent of families drove more than 1 hour to access comprehensive sickle cell care. Caregivers reported having a median of 2 other healthcare providers that their child regularly sees. However, nearly 10% did not have an established primary care provider. Caregivers identified a median number of 6 barriers to accessing SCD care, with other household responsibilities, childcare, lost time from work and school as the most common. About 20% of caregivers felt these barriers affected their and/or their child's well-being and/or mental health at times, yet less than half reported their healthcare team ever discussing ways to address these barriers. Approximately 40% felt having a child with sickle cell disease impacted their daily stress and/or mental health. Sixty-three percent of caregivers worried about others (e.g. school staff) caring for their child, and nearly 50% worried about the care and knowledge of medical providers other than their SCD team.

Forty percent of caregivers had participated in some form of telemedicine, the majority being direct-to-consumer. Eighty-one percent were willing to participate in telemedicine visits sometimes or always. However, nearly half felt the lack of a physical exam was a negative for telemedicine, and about 25% stated it was harder to build trust via telemedicine. Willingness to participate in telemedicine was not associated with prior telemedicine use, perceived positives/negatives of telemedicine, caregiver worry about others caring for their child, or distance from SCD center.

Conclusion: The experiences of caregivers accessing healthcare for their child with SCD suggests caregiver burden and barriers to care that may be unique to patients with SCD. Additionally, while the majority are willing to participate in telemedicine for future sickle cell care, the negatives of telemedicine that caregivers reported are significant. Future studies should evaluate models of telemedicine care adapted for this specific population.

Jacob:Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees.