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



(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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