Patient Reported Outcome in Sickle Cell Disease and Treatment

Yoosef Hussain Alzaydey, Saif Hussien Alzaydey, Omar Abdulaziz Al-Nasser, Norah hamad Almogri, Essa Abdulrahman Al Mutairi, Satam Essa Alhamdan, Yousef Mushahhin almutairi, Waladin Faiz Mahrus, Dina Abdulwahab Abumelha

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.  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.

Keywords: sickle Cell Disease, treatment, patients and healthcare staff.

Title: Patient Reported Outcome in Sickle Cell Disease and Treatment

Author: Yoosef Hussain Alzaydey, Saif Hussien Alzaydey, Omar Abdulaziz Al-Nasser, Norah hamad Almogri, Essa Abdulrahman Al Mutairi, Satam Essa Alhamdan, Yousef Mushahhin almutairi, Waladin Faiz Mahrus, Dina Abdulwahab Abumelha

International Journal of Healthcare Sciences

ISSN 2348-5728 (Online)

Vol. 11, Issue 2, October 2023 - March 2024

Page No: 86-90

Research Publish Journals

Website: www.researchpublish.com

Published Date: 21-December-2023

DOI: https://doi.org/10.5281/zenodo.10417768

Vol. 11, Issue 2, October 2023 - March 2024

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Patient Reported Outcome in Sickle Cell Disease and Treatment by Yoosef Hussain Alzaydey, Saif Hussien Alzaydey, Omar Abdulaziz Al-Nasser, Norah hamad Almogri, Essa Abdulrahman Al Mutairi, Satam Essa Alhamdan, Yousef Mushahhin almutairi, Waladin Faiz Mahrus, Dina Abdulwahab Abumelha