Research Article

HONOUR AND TRAGEDY: A DRAMATIC STUDY OF CULTURAL NARRATIVES AND SOCIAL EFFECTS

ISSN: 3067-2686

DOI Prefix: 10.5281/zenodo.

Authors: Fatoumata Mariam Diallo , Kwame Nii-Lante Mensah
Published: Volume 12, Issue 2 (2025)
Date: July 3, 2025

Abstract

Sickle cell disease (SCD) is a hereditary blood disorder characterized by the presence of abnormal hemoglobin, resulting in the deformation of red blood cells. As the management of SCD has evolved over the years, there has been an increasing emphasis on patient-reported outcomes (PROs) to capture the holistic impact of the disease and its treatments. This comprehensive review aims to summarize the current understanding of PROs in SCD and treatment interventions. By examining a wide range of studies and literature, we explore the various PRO measures utilized in assessing SCD-related symptoms, functional status, and overall well-being. PROs in SCD typically encompass pain intensity, frequency, and interference, as well as health-related quality of life domains such as physical functioning, emotional well-being, and social interactions. Patient-reported outcomes can be obtained through validated questionnaires, interviews, or electronic platforms, providing valuable insights into the individual experiences of patients with SCD. By incorporating patient perspectives and preferences, researchers and healthcare professionals gain a deeper understanding of treatment effectiveness, adverse events, and patient satisfaction. PROs also serve as valuable tools for shared decision-making, enabling patients to actively participate in their own care.Β  Issues such as cultural variations, language barriers, and appropriate age-specific measures need to be addressed to ensure the accurate capture of patients' experiences. Additionally, longitudinal studies are needed to assess the long-term impact of SCD and its treatments on PROs. In conclusion, patient-reported outcomes provide a comprehensive understanding of the impact of sickle cell disease and its treatments on individuals' lives. By incorporating PRO measures into clinical practice and research, healthcare professionals can tailor treatment plans, enhance patient satisfaction, and ultimately improve the overall well-being of individuals living with SCD.Β