Sickle cell disease in Grenada: Quality of life and barriers to care

Alyssa Grygiel, Felicia Ikolo, Raphielle Stephen, Dawnell Bleasdille, Patricia Robbins-Furman, Beverly Nelson, Andrew K. Sobering, Sarah H. Elsea

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Grenada is a small, resource-limited Caribbean country with a high incidence of sickle cell disease (SCD). Since little is known about the challenges facing individuals living with SCD in the West Indies, we sought to assess barriers to healthcare and the impact of SCD on quality of life in Grenada. Methods: Both adults aged 18+ (n = 19) and caregivers of children aged 2–17 (n = 26) completed validated survey measures regarding barriers to care and quality of life, along with a genetics knowledge questionnaire. Caregivers also completed a caregiver burden scale. Survey scores were calculated, and responses were analyzed for an association between demographic variables. Results: The Barriers to Care Questionnaire, in which lower scores indicate more barriers, revealed that both adults (mean = 69.9) and children (mean = 75.5) with SCD experienced reduced access to care. The Adult Sickle Cell Quality of Life Measurement Information System indicated increased depression and loneliness in adults, with the lowest scores in the Emotional subscale. However, the Pediatric Quality of Life Inventory answered by caregivers of children with SCD showed the lowest scores in the Physical Functioning subscale. Further analysis using the Caregiver Burden Scale-Zarit Burden Interview revealed that 53.8% of caregivers of children with SCD indicated “little to no burden,” which may reflect a difference in cultural expectations of a caregiver between high-income countries and Grenada. Finally, ~80% of respondents knew that SCD was a genetic condition; however, 61%–84% could not correctly indicate recurrence risks, demonstrating a need for additional education. Conclusion: These data provide new insights regarding the experience of living with SCD in Grenada and support the need for further investigations into specific barriers to healthcare delivery, which could also improve education and well-being for those affected by SCD in Grenada and in the broader Caribbean community.

Original languageEnglish (US)
Article numbere1567
JournalMolecular Genetics and Genomic Medicine
Volume9
Issue number1
DOIs
StatePublished - Jan 2021
Externally publishedYes

Keywords

  • barriers to care
  • Grenada
  • quality of life
  • resource-limited
  • sickle cell disease

ASJC Scopus subject areas

  • Molecular Biology
  • Genetics
  • Genetics(clinical)

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