Psychosocial Problems in People Living with Thalassemia: A Systematic Review.

Abstract

Background: Thalassemia is a genetic disease that is inherited in families and has been designated as a global burden. Individuals living with thalassemia may experience impacts on their psychosocial well-being. However, there is a gap of limited study at the systematic review level regarding the extent to which psychosocial aspects contribute to the overall problems and burdens experienced by people living with thalassemia.

Aim: This study aimed to synthesize the evidence on psychosocial problems in people living with thalassemia to provide comprehensive insight.

Methods: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline was used to guide this systematic review. All relevant empirical studies in the English language that assessed the variety of psychosocial aspects were included. A total of 1,466 articles were identified from PubMed, CINAHL, ProQuest, PsycINFO, Scopus, Web of Science, and Cochrane databases from those inceptions to 6 March 2023. 1,443 articles were excluded due to duplication, not thalassemia- or psychosocial-related, availability of full-text, and not including patients. Finally, 13 studies were included and assessed using Mixed Methods Appraisal Tool (MMAT) appraisal tools. This study is already registered in International Prospective Register of Systematic Reviews (CRD42023431082).

Results: This review analyzed 13 full-text studies conducted between 1993 and 2022. The MMAT quality assessment rated all 13 studies as high quality. The included studies used various designs, with six non-randomized quantitative studies, five descriptive quantitative studies, and two qualitative studies. The review summarizes each study's main findings, highlighting psychosocial problems and related outcomes, such as adherence and psychosocial morbidity, anxiety, educational and social impairment, coping style, internalizing and externalizing behaviors, and adaptive behaviors and family relationships.

Discussion: The available literature globally highlights the psychosocial challenges of people living with thalassemia, particularly those who require regular blood transfusions across different timeframes. Despite inconsistent definitions across studies, it is notable that patients with thalassemia major facing physical changes associated with facial defects and experience significant psychosocial issues related to self-image, social interactions, and relationships that influence quality of life.