ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2020
The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07188766 (Fluid Management in Sickle Cell Disease Vaso-occlusive Crisis), which is not on this map. Cited by 35 papers, 3 of them syntheses that pooled it.
What it found
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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.
Fluid Management in Sickle Cell Disease Vaso-occlusive Crisis: Restrictive Versus Liberal Strategies: A Randomized Controlled Trial (FLASC Trial)
Who cites it
35 citing papers in PubMed, 3 syntheses or guidelines pooled it, 68 citations in OpenAlex.
- Medical and Non-medical Costs of Sickle Cell Disease and Treatments from a US Perspective: A Systematic Review and Landscape Analysis.PharmacoEconomics - open · 2022Pooled it
- Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.Frontiers in pediatrics · 2022Pooled it
- A systematic literature review of frequency of vaso-occlusive crises in sickle cell disease.Orphanet journal of rare diseases · 2021Pooled it
- Real-World Evidence of Crizanlizumab Showing Reductions in Vaso-Occlusive Crises and Opioid Usage in Sickle Cell Disease.European journal of haematology · 2025Trial
- Consistency of ASCQ-Me Scores Across Repeated Measures in Sickle Cell Disease.Western journal of nursing research · 2026Observational
- Empirical estimate for the indirect healthcare costs of sickle cell disease from a retrospective cohort study in England between 2007 and 2019.BMC health services research · 2026Article
- Health-related quality of life among patients with sickle cell disease in the hereditary blood disease center in Saudi Arabia.Medicine · 2026Article
- Development of a Novel Patient-Reported Outcome Diary to Capture and Monitor Home-Managed Pain Crises in Patients with Sickle Cell Disease.Advances in therapy · 2026Article
- Epidemiology of vaso-occlusive crisis among sickle cell disease patients in India: A community-based multi-centric study.The Indian journal of medical research · 2026Article
- Sickle Cell Disease: Treatment Options of the Past, Present, and Future.The American journal of nursing · 2026Review
- Clinical Complications, Mortality, and Healthcare Resource Utilization of Patients with Sickle Cell Disease with Recurrent Vaso-Occlusive Crises in Ontario, Canada: A Retrospective Cohort Study.Advances in therapy · 2026Article
- Health-related quality of life and economic impacts in adults with sickle cell disease with recurrent vaso-occlusive crises: findings from a prospective longitudinal real-world survey.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- A Patient Centric Model for Vaso-Occlusive Crises in Sickle Cell Disease-Outcomes of a Consensus Exercise Conducted Across Patients and Experts.Clinical and translational science · 2025Article
- Qualitative Assessment of Health-Related Quality of Life Impacts Associated with Sickle Cell Disease in the United States and United Kingdom.Advances in therapy · 2025Article
- Understanding stakeholders' experience with sickle cell disease by social media listening across Europe.Frontiers in genetics · 2025Article
- Article
- Proliferative Sickle Cell Retinopathy: A Patient and a Physician's Perspective on Quality of Life and Quality of Eye Care.Ophthalmology and therapy · 2024Article
- Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease.Blood advances · 2024Article
- The value-based price of transformative gene therapy for sickle cell disease: a modeling analysis.Scientific reports · 2024Article
- Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study.Frontiers in public health · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposePatients with sickle cell disease (SCD) may experience sickle cell-related pain crises, also referred to as vaso-occlusive crises (VOCs), which are a substantial cause of morbidity and mortality. The study explored how VOC frequency and severity impacts health-related quality of life (HRQoL) and work productivity.
methodsThree hundred and three adults with SCD who completed an online survey were included in the analysis. Patients answered questions regarding their experience with SCD and VOCs, and completed the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Workplace Productivity and Activity Impairment: Specific Health Problem (WPAI:SHP). Differences in ASCQ-Me and WPAI:SHP domains were assessed according to VOC frequency and severity.
resultsNearly half of the patient sample (47.2%) experienced ≥ 4 VOCs in the past 12 months. The most commonly reported barriers to receiving care for SCD included discrimination by or trouble trusting healthcare professionals (39.6%, 33.3%, respectively), limited access to treatment centers (38.9%), and difficulty affording services (29.4%). Patients with more frequent VOCs reported greater impacts on emotion, social functioning, stiffness, sleep and pain, and greater absenteeism, overall productivity loss, and activity impairment than patients with less frequent VOCs (P < 0.05). Significant impacts on HRQoL and work productivity were also observed when stratifying by VOC severity (P < 0.05 for all ASCQ-Me and WPAI domains, except for presenteeism).
conclusionsResults from the survey indicated that patients with SCD who had more frequent or severe VOCs experienced deficits in multiple domains of HRQoL and work productivity. Future research should examine the longitudinal relationship between these outcomes.
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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.