Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Observational Study
. 2019 Feb;8(2):543-553.
doi: 10.1002/cam4.1953. Epub 2019 Jan 11.

Fatigue, symptom burden, and health-related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria

Carmen P Escalante  1 , Stephanie Chisolm  2 , Juhee Song  3 , Marsha Richardson  1 , Ellen Salkeld  4 , Etsuko Aoki  1 , Guillermo Garcia-Manero  5
Affiliations
Observational Study

Fatigue, symptom burden, and health-related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria

Carmen P Escalante et al. Cancer Med. 2019 Feb.

Abstract

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.

Keywords: aplastic anemia; fatigue; myelodysplastic syndrome; paroxysmal nocturnal hematuria; quality of life.

PubMed Disclaimer

Conflict of interest statement

There are no conflicts of interest to report.

Figures

Figure 1
Figure 1
A total of 303 patients were studied
See this image and copyright information in PMC

References

    1. Savage SA, Pulsipher MA, Romano A, Berlyne D. Aplastic Anemia & MDS International Foundation (AA&MDSIF): bone marrow failure disease scientific symposium 2012. Leuk Res. 2013;37(7):848‐851. - PubMed
    1. Vardiman JW, Thiele J, Arber DA, et al. The 2008 revision of the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia: rationale and important changes. Blood. 2009;114(5):937‐951. - PubMed
    1. Ma X, Does M, Raza A, Mayne ST. Myelodysplastic syndromes: incidence and survival in the United States. Cancer. 2007;109(8):1536‐1542. - PubMed
    1. Aul C, Gattermann N, Schneider W. Age‐related incidence and other epidemiological aspects of myelodysplastic syndromes. Br J Haematol. 1992;82(2):358‐367. - PubMed
    1. Rollison DE, Howlader N, Smith MT, et al. Epidemiology of myelodysplastic syndromes and chronic myeloproliferative disorders in the United States, 2001‐2004, using data from the NAACCR and SEER programs. Blood. 2008;112(1):45‐52. - PubMed

Publication types

MeSH terms

LinkOut - more resources