Synapse
⌘+K
Synapse
PulseExploreClubsResearchersJournals
Instagram
HomeClubsExplore
December 8, 2025BloodOpen Access

Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises

View Full Paper
Ask AI
Bookmark
Share

Authors

DBDuncan BrownMCMelanie CalvertAMAnthony Mason

Discussion

Loading...

Member takes

Overview

Quantitative survey highlights quality of life burdens on caregivers of sickle cell disease patients with vaso-occlusive crises, indicating significant health inequities.

Key Points

  • To evaluate the economic and humanistic impact of caregiving on those responsible for patients with sickle cell disease and recurrent vaso-occlusive crises.
  • Conducted a quantitative online survey among caregivers from North America and Europe
  • Assessed demographic, clinical, and health-related quality of life data
  • Utilized validated measures including CarerQOL-7D, ZBI-12, and WPAI questionnaires
  • 173 caregivers participated, predominantly female (76.9%) with an average age of 40.5 years
  • Caregivers reported an average of 5.1 vaso-occlusive crises in the past year, affecting their quality of life
  • 63.6% of caregivers experienced financial distress and an average annual out-of-pocket cost of $8,652

Cite This Study

Brown et al. (2025) studied this question.

synapsesocial.com/papers/693624d74fa91c937236d099https://doi.org/10.1182/blood-2025-1092
View Full Paper
Ask AI
Bookmark
Share

Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Caregiver Well‐Being and Pediatric Healthcare Utilization in Youth With Sickle Cell Disease: The Role of Caregiver and Child Factors2025 · 1 citations
  2. 2Burden assessment in caregivers of patients with schizophrenia2025
  3. 3Understanding the impact of chronic red blood cell transfusion on day-to-day functioning in sickle cell disease (SCD): A mixed methods study of pediatric and adult experience2025
  4. 4Risk of vaso-occlusive crisis requiring hospitalization in sickle cell disease patients in Brazil: retrospective cohort study of real-world data2025
  5. 5The Burden of Informal Caregiving for Adults with Musculoskeletal Conditions: A Systematic Review2025