Observational studyCancer medicine2019
Fatigue, symptom burden, and health-related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria.
Observational study in Cancer medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
38 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Burden of myelodysplastic syndromes: a systematic literature review of economic burden.The European journal of health economics : HEPAC : health economics in prevention and care · 2025Pooled it
- Ravulizumab demonstrates long-term efficacy, safety and favorable patient survival in patients with paroxysmal nocturnal hemoglobinuria.Annals of hematology · 2025Trial
- Pharmacokinetics, pharmacodynamics, efficacy, and safety of ravulizumab in pediatric paroxysmal nocturnal hemoglobinuria.Blood advances · 2024Trial
- Predictors for improvement in patient-reported outcomes: post hoc analysis of a phase 3 randomized, open-label study of eculizumab and ravulizumab in complement inhibitor-naive patients with paroxysmal nocturnal hemoglobinuria.Annals of hematology · 2024Trial
- Trial
- One-year outcomes from a phase 3 randomized trial of ravulizumab in adults with paroxysmal nocturnal hemoglobinuria who received prior eculizumab.European journal of haematology · 2021Trial
- Effect of home-based exercise program on patients with aplastic anemia treated with allogeneic hematopoietic stem cell transplantation: a non-randomized trial.Journal of cancer survivorship : research and practice · 2026Article
- Disease burden and treatment patterns of paroxysmal nocturnal hemoglobinuria in Japan: a real-world survey.International journal of hematology · 2026Article
- Mapping Health State Utility from Disease-Specific Measures in Spinal Muscular Atrophy and Paroxysmal Nocturnal Hemoglobinuria.PharmacoEconomics · 2026Article
- Article
- Characterizing clinically significant extravascular hemolysis in adults with PNH on ravulizumab or eculizumab treatment.Blood advances · 2025Article
- Article
- Unmet Needs and Their Impact on Quality of Life and Symptoms in Myelodysplastic Neoplasm Patients and Caregivers.Cancers · 2025Article
- The association between cumulative distal and proximal adversity with depression and anxiety among township grassroots civil servants in China.Frontiers in psychiatry · 2025Article
- Heterogeneity in Health-Related Quality of Life of Patients with Aplastic Anemia: A Latent Profile Analysis.Patient preference and adherence · 2025Article
- Health-related quality of life and symptom-specific functional impairment among patients treated with parenterally administered complement inhibitors for paroxysmal nocturnal hemoglobinuria.Annals of hematology · 2024Observational
- Real-World Study of US Adults with Paroxysmal Nocturnal Hemoglobinuria Treated with Pegcetacoplan.Hematology reports · 2024Article
- Momelotinib in myelofibrosis and beyond: a comprehensive review of therapeutic insights in hematologic malignancies.Discover oncology · 2024Review
- Patient-reported outcomes and daily activity assessed with a digital wearable device in patients with paroxysmal nocturnal hemoglobinuria treated with ravulizumab: REVEAL, a prospective, observational study.Health and quality of life outcomes · 2024Observational
- Quality of life after immune suppressive therapy in aplastic anemia.Annals of hematology · 2024Article
Corrections and comments
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Authors and funding
7 authors.
Funding
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.
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