Open AccessFatigue, symptom burden, and health‐related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria
Author(s) -
Escalante Carmen P.,
Chisolm Stephanie,
Song Juhee,
Richardson Marsha,
Salkeld Ellen,
Aoki Etsuko,
GarciaManero Guillermo
Publication year - 2019
Publication title -
cancer medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.403
H-Index - 53
ISSN - 2045-7634
DOI - 10.1002/cam4.1953
Subject(s) - medicine , paroxysmal nocturnal hemoglobinuria , quality of life (healthcare) , depression (economics) , anxiety , cohort , myelodysplastic syndromes , aplastic anemia , anemia , physical therapy , psychiatry , bone marrow , nursing , economics , macroeconomics
Background Fatigue is distressing and affects quality of life (QoL) among patients with myelodysplastic syndrome ( MDS ), aplastic anemia ( AA ), and paroxysmal nocturnal hemoglobinuria ( PNH ). Limited data exist on the impact of fatigue, QoL, and related symptoms in these patients. Objective Prospectively assess fatigue (functional assessment of cancer therapy‐anemia [ FACT ‐An]); QoL ( FACT ‐An subscales); pain (brief pain inventory); and depression, anxiety, and stress (depression anxiety stress scale‐21) and strategies used to manage these symptoms in patients with MDS , AA , and PNH . Methods Surveys were administered via the AA and MDS International Foundation website and database from October 2014 through April 2015 in a cross‐sectional study. Results were summarized using descriptive statistics. Results Of 303 patients, 145 (48%) had MDS , 84 (28%) had AA , and 74 (24%) had PNH ; 31 (10%) had >1 diagnosis. The mean age was 57 years, 200 (66%) were female, and 195 (92%) were white. The mean fatigue scores were 25 (range 1‐52) for the whole cohort, 28 for AA , 25 for MDS , and 24 for PNH ( P = 0.117); these are all considered severe level. The mean QoL score was 68 (range 10‐104) for the whole cohort, 67 for AA , 69 for MDS , and 67 for PNH ( P = 0.821). The ranges for stress were normal; pain and depression, mild; and anxiety, moderate. The most common management strategies perceived as helpful for fatigue in the past month were preserving energy, physical activity, and naps. Conclusions Many patients with MDS , AA , and PNH report severe fatigue. The helpfulness of fatigue management strategies may impact patients’ continued use; whether these strategies are beneficial and decrease fatigue levels needs more study.