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

Carmen P Escalante,Stephanie Chisolm,Juhee Song,Guillermo Garcia‐Manero,Ellen Salkeld,Marsha Richardson,Etsuko Aoki

doi:10.1002/cam4.1953

Abstract

BackgroundFatigue 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.ObjectiveProspectively 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.MethodsSurveys 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.ResultsOf 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.ConclusionsMany 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.

Highlights

Myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH) are rare disorders of bone marrow failure and have overlapping pathophysiologies.1 AA and PNH are not defined as malignancies but may transition to leukemias.2 the American Cancer Society considers myelodysplastic syndrome (MDS) a malignancy.Myelodysplastic syndrome includes a diverse group of hematopoietic stem cell disorders categorized by dysplastic and ineffectual blood cell production
In collaboration with the Aplastic Anemia and MDS International Foundation, Survey Monkey (SurveyMonkey Inc.; Palo Alto, CA, USA; www.surveymonkey.com) was employed to achieve the studys objectives by administering surveys to patients with MDS, AA, and PNH registered in the Foundations database
Our findings showed that patients with MDS, AA, and PNH have severe levels of fatigue with decreased quality of life (QoL)

Summary

Introduction

Myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH) are rare disorders of bone marrow failure and have overlapping pathophysiologies. AA and PNH are not defined as malignancies but may transition to leukemias. the American Cancer Society considers MDS a malignancy.Myelodysplastic syndrome includes a diverse group of hematopoietic stem cell disorders categorized by dysplastic and ineffectual blood cell production. Myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH) are rare disorders of bone marrow failure and have overlapping pathophysiologies.. Fatigue is distressing and affects quality of life (QoL) among patients with myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH). 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. 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 helpfulness of fatigue management strategies may impact patients’ continued use; whether these strategies are beneficial and decrease fatigue levels needs more study

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