Description

Taher et al reported a patient-reported outcome (PRO) symptom measure for patients with nontransfusion-dependent thalassemia (NTDT). The authors are from multiple institutions in Lebanon, Thailand, Europe, Canada, and the United States.


NOTE: The name NTDT-PRO is copyrighted.

 

Patient selection: non-transfusion dependent thalassemia

 

Outcome: health-related quality of life based on anemia-related symptoms

 

Symptoms:

(1) tiredness without physical activity

(2) tiredness with physical activity

(3) shortness of breath without physical activity

(4) shortness of breath with physical activity

(5) weakness without physical activity

(6) weakness with physical activity

 

Each item is graded on a 10 cm VAS scale (0 for none, 10 for extreme).

 

Findings are summarized into 2 concepts:

(1) tiredness/weakness

(2) shortness of breath

 

Other factors initially included but removed:

(1) worst pain

(2) ability to concentrate

(3) headaches

(4) pallor


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