ArticleBMC health services research2023
Understanding caregiver burden with accessing sickle cell care in the Midwest and their perspective on telemedicine.
Article in BMC health services research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 14 citations in OpenAlex.
- Impact of telehealth on hydroxyurea adherence and clinical outcomes in sickle cell disease management: A systematic review and meta-analysis.Journal of managed care & specialty pharmacy · 2026Pooled it
- Novel use of a hash-based tokenization for sharing sickle cell disease data without sharing protected health information.Blood advances · 2026Article
- Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium.Journal of public health (Oxford, England) · 2026Article
- The Emotional and Psychological Impact on Families Raising Children With Special Needs: A Primary Care Perspective.Health science reports · 2026Article
- Low depression rates among caregivers of young children with sickle cell disease: a rapid report.Journal of sickle cell disease · 2026Article
- Article
- Assessing psychosocial risk factors in children with Sickle Cell Disease.BMC health services research · 2025Article
- Impact of Neighborhood Disadvantage on Preventive and Acute Care Utilization in Sickle Cell Disease.Pediatric blood & cancer · 2025Article
- Observational
- Tracking Telehealth Needs for Individuals With Sickle Cell Disease Through the COVID-19 Pandemic: A Cross-Sectional Survey Study.Health science reports · 2024Article
- Perspectives of Caregivers on Access to Health Care for Children with CKD.Kidney international reports · 2024Article
- Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease.Blood advances · 2024Article
- Creating demand for unmet needs: Agile Storytelling.Frontiers in health services · 2024Article
- Music as Supportive Care for Young Children with Sickle Cell Disease and their Parents: A Three-phase Qualitative Exploration into the Cultural Relevance of Active Music Engagement with Black Families.Global advances in integrative medicine and healthArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundSurvival 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.
methodsThe 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.
resultsThe 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.
conclusionThis 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.