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. 2023 May 17;23(1):500.
doi: 10.1186/s12913-023-09383-x.

Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine

Seethal A Jacob  1   2   3 , Jillian Bouck  4   5 , Roua Daas  4   5 , Meghan Drayton Jackson  6   5 , Julia E LaMotte  6   5 , Aaron E Carroll  4   5
Affiliations

Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine

Seethal A Jacob et al. BMC Health Serv Res. .

Abstract

Background: Survival for children with sickle cell disease (SCD) has improved significantly. However, patients with SCD still encounter several impediments to accessing adequate healthcare. Rural and medically underserved areas, such as parts of the Midwest, can exacerbate these barriers, separating children with SCD from subspecialists even further. Telemedicine has been a means to close these gaps in care for children with other special healthcare needs, but few studies have discussed how caregivers of children with SCD perceive its use.

Methods: The objective of this study is to understand the experiences of caregivers of pediatric SCD patients in a geographically diverse area in the Midwest in accessing care, and their perspectives of telemedicine. Caregivers of children with SCD completed an 88-item survey via a secured REDCap link either in-person or via secure text. Descriptive statistics (means, medians, ranges, frequencies) were performed for all responses. Univariate chi square tests were performed to analyze associations, particularly with telemedicine responses.

Results: The survey was completed by 101 caregivers. Nearly 20% of families traveled more than 1 hour to reach the comprehensive SCD center. Other than their SCD provider, caregivers reported their child having at least 2 other healthcare providers. Most barriers caregivers identified were financial or resource based. Almost a quarter of caregivers expressed feeling as though these barriers impacted their and/or their child's mental health. Ease of access to team members, as well as scheduling, were common facilitators of care cited by caregivers. The majority were willing to participate in telemedicine visits, regardless of how far they lived from the SCD center, though many noted aspects requiring adaptation.

Conclusion: This cross-sectional study describes barriers to care experienced by caregivers of children with SCD, regardless of proximity to an SCD center, as well as caregiver perceptions of the usefulness and acceptability of telemedicine for SCD care.

Keywords: Access to Health Care; Pediatric; Sickle cell disease; Telehealth; Telemedicine.

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Conflict of interest statement

The authors have no conflicts of interest to disclose.

Figures

Fig. 1
Fig. 1
Items that affect ability to access medical care (N = 101)
Fig. 2
Fig. 2
Perceived positives and negatives of telemedicine (N = 101)
See this image and copyright information in PMC

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References

    1. Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood. 2010;115(17):3447–52. doi: 10.1182/blood-2009-07-233700. - DOI - PMC - PubMed
    1. Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute care utilization and rehospitalizations for sickle cell disease. JAMA. 2010;303(13):1288–94. doi: 10.1001/jama.2010.378. - DOI - PubMed
    1. Boulet SL, Yanni EA, Creary MS, Olney RS. Health status and healthcare use in a national sample of children with sickle cell disease. Am J Prev Med. 2010;38(4 Suppl):528–35. doi: 10.1016/j.amepre.2010.01.003. - DOI - PubMed
    1. Raphael JL, Rattler TL, Kowalkowski MA, Brousseau DC, Mueller BU, Giordano TP. Association of care in a medical home and health care utilization among children with sickle cell disease. J Natl Med Assoc. 2013;105(2):157–65. - PMC - PubMed
    1. Shankar SM, Arbogast PG, Mitchel E, Ding H, Wang WC, Griffin MR. Impact of proximity to comprehensive sickle cell center on utilization of healthcare services among children with sickle cell disease. Pediatr Blood Cancer. 2008;50(1):66–71. doi: 10.1002/pbc.21066. - DOI - PubMed