Policy Brief: Is Follow-up Care the Missing Link in Thalassemia Quality-of-Life Policies?

Abstract

Context: Despite improved survival, many patients with thalassemia major continue to experience a poor quality of life that is not adequately addressed by routine treatment alone. This represents an important gap in thalassemia care. Objectives: To underscore the need to integrate a structured follow-up care model into chronic thalassemia services as a practical policy response to improve patients’ quality of life. Evidence Acquisition: Evidence was obtained from a clinical intervention conducted among patients with thalassemia major in southeastern Iran. The follow-up care model integrated patient education, psychosocial support, and family involvement into existing healthcare settings. Results: Implementation of the structured follow-up care model significantly improved quality-of-life outcomes among patients with thalassemia major and was feasible in existing care settings. Conclusions: Structured follow-up care should be incorporated into thalassemia management policies and routine chronic care services. Health authorities and service managers should support its implementation through workforce training, integration into routine monitoring systems, and the strengthening of patient-centered care.