ArticleAmerican journal of hematology2021
Impact of sickle cell disease on patients' daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY).
Article in American journal of hematology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 106 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
106 citing papers in PubMed, 3 syntheses or guidelines pooled it, 176 citations in OpenAlex.
- Measurement of fatigue in sickle cell disease: a systematic review of fatigue measures.Orphanet journal of rare diseases · 2025Pooled it
- Physicians' attitudes and experiences about withholding/withdrawing life-sustaining treatments in pediatrics: a systematic review of quantitative evidence.BMC palliative care · 2023Pooled it
- Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.Frontiers in pediatrics · 2022Pooled it
- Hemoglobinometry at the point of care with activation of a hospital transfusion pathway versus usual care for the early detection of anaemia in primary care: the ANHEMOG randomized controlled trial.BMC primary care · 2026Trial
- Improvements in health-related quality of life in patients with severe sickle cell disease after exagamglogene autotemcel.Blood advances · 2025Trial
- HABIT Efficacy Trial Intervention Improves Elements of General and Disease-Specific Quality of Life in Youth With Sickle Cell Disease.Pediatric blood & cancer · 2025Trial
- Real-World Evidence of Crizanlizumab Showing Reductions in Vaso-Occlusive Crises and Opioid Usage in Sickle Cell Disease.European journal of haematology · 2025Trial
- One-year safety and efficacy of mitapivat in sickle cell disease: follow-up results of a phase 2, open-label study.Blood advances · 2023Trial
- Society for Maternal-Fetal Medicine Special Statement: Checklists for persons with sickle cell disease in pregnancy.Pregnancy (Hoboken, N.J.) · 2026Article
- Effect of EMDR for reduction of pain interference in children with sickle cell disease, the RELAX study: a randomized controlled trial protocol.BMC pediatrics · 2026Article
- Three-year safety, efficacy, and renal outcomes of mitapivat treatment in sickle cell disease: results from the phase 2 open-label study.Haematologica · 2026Article
- Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Evaluation of non-opioid therapies for pain management of sickle cell disease: a literature-based review.Annals of hematology · 2026Review
- Article
- Exercise in Sickle Cell Disease: The Impact on Pathophysiology and Clinical Symptoms.Children (Basel, Switzerland) · 2026Review
- A Qualitative Phenomenological Study of Treatment Options for Patients with SCD and Chronic Pain: Buprenorphine-Naloxone or Full-Agonist Therapy.International journal of environmental research and public health · 2026Article
- Navigating pregnancy, postpartum care and reproductive autonomy with sickle cell disease in Uganda: an interpretive phenomenological study in Eastern and Central Uganda.Research square · 2026Article
- Patient Experiences of Acute Pain Communication in Sickle Cell Disease and Perspectives on Improving Clinician Communication.Journal of clinical psychology in medical settings · 2026Article
- Incidence and risk factors for vaso occlusive crisis among children living with sickle cell disease in Uganda: a cohort study.Research square · 2026Article
- Health-related quality of life among patients with sickle cell disease in the hereditary blood disease center in Saudi Arabia.Medicine · 2026Article
46 more citing papers are in PubMed but not listed here.
Corrections and comments
- Commented on by
Authors and funding
21 authors at 19 institutions in 9 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Sickle cell disease (SCD) is a genetic disorder, characterized by hemolytic anemia and vaso-occlusive crises (VOCs). Data on the global SCD impact on quality of life (QoL) from the patient viewpoint are limited. The international Sickle Cell World Assessment Survey (SWAY) aimed to provide insights into patient-reported impact of SCD on QoL. This cross-sectional survey of SCD patients enrolled by healthcare professionals and advocacy groups assessed disease impact on daily life, education and work, symptoms, treatment goals, and disease management. Opinions were captured using a Likert scale of 1-7 for some questions; 5-7 indicated "high severity/impact." Two thousand one hundred and forty five patients (mean age 24.7 years [standard deviation (SD) = 13.1], 39% ≤18 years, 52% female) were surveyed from 16 countries (six geographical regions). A substantial proportion of patients reported that SCD caused a high negative impact on emotions (60%) and school achievement (51%) and a reduction in work hours (53%). A mean of 5.3 VOCs (SD = 6.8) was reported over the 12 months prior to survey (median 3.0 [interquartile range 2.0-6.0]); 24% were managed at home and 76% required healthcare services. Other than VOCs, fatigue was the most commonly reported symptom in the month before survey (65%), graded "high severity" by 67% of patients. Depression and anxiety were reported by 39% and 38% of patients, respectively. The most common patient treatment goal was improving QoL (55%). Findings from SWAY reaffirm that SCD confers a significant burden on patients, epitomized by the high impact on patients' QoL and emotional wellbeing, and the high prevalence of self-reported VOCs and other symptoms.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.