Trial reportAmerican journal of hematology2020
Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium.
Trial report in American journal of hematology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 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
25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 46 citations in OpenAlex.
- Measurement of fatigue in sickle cell disease: a systematic review of fatigue measures.Orphanet journal of rare diseases · 2025Pooled it
- Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.Frontiers in pediatrics · 2022Pooled it
- Retinal imaging and supervised learning predict hospitalizations and kidney and heart-lung damage in sickle cell disease.Blood advances · 2026Observational
- Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease.JAMA network open · 2026Observational
- A Scoping Review of Qualitative Studies on Inpatient Care for Individuals with Sickle Cell Disease.Journal of general internal medicine · 2026Article
- Health-related quality of life among patients with sickle cell disease in the hereditary blood disease center in Saudi Arabia.Medicine · 2026Article
- Impact of Isovolemic Hemodilution-Red Cell Exchange on Health-Related Quality of Life in Patients With Sickle Cell Disease: A Pilot Study.Journal of clinical apheresis · 2026Article
- Statewide Academic Performance of High School Students With Sickle Cell Disease.Pediatric blood & cancer · 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
- Depression, sleep and pain affect instrumental activities of daily living through cognitive functioning in adults with sickle cell disease: A report from the Sickle Cell Disease Implementation Consortium.British journal of haematology · 2025Article
- Epigenetic Aging Associations With Psychoneurological Symptoms and Social Functioning in Adults With Sickle Cell Disease.Biological research for nursing · 2024Article
- Determinants of cognitive dysfunction in adults with sickle cell-related stroke or suspected neurological morbidity.Blood advances · 2024Article
- Mortality in adults with sickle cell disease: Results from the sickle cell disease implementation consortium (SCDIC) registry.American journal of hematology · 2024Article
- Burden of Aging: Health Outcomes Among Adolescents and Young Adults With Sickle Cell Disease.HemaSphere · 2023Article
- Neurocognitive and emotional factors predict pain-related healthcare utilization in children with sickle cell disease.Pediatric blood & cancer · 2023Article
- Characterising the prevalence of overweight and obese status among adults with sickle cell disease.British journal of haematology · 2023Article
- An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Examining resilience of individuals living with sickle cell disease in the COVID-19 pandemic.BMC psychology · 2022Article
- Pregnancy outcomes with hydroxyurea use in women with sickle cell disease.American journal of hematology · 2022Article
- Moving Toward a Multimodal Analgesic Regimen for Acute Sickle Cell Pain with Non-Opioid Analgesic Adjuncts: A Narrative Review.Journal of pain research · 2022Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors at 11 institutions in 1 country.
Funding
Abstract
Understanding patient experiences, quality of life, and treatment needs in individuals with sickle cell disease (SCD) is essential in promoting health and well-being. We used measures from the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Patient Reported Outcomes Measurement Information System (PROMIS), and Quality of Life in Neurological Disorders (NeuroQol) to evaluate pain impact, sleep impact, social functioning, depressive symptoms, tiredness, and cognitive function (collectively, patient reported outcomes [PROs]) and to identify associated demographic and clinical characteristics. Participants (n = 2201) between 18 and 45 years were recruited through the eight Sickle Cell Disease Implementation Consortium (SCDIC) sites. In multivariate models, PROs were significantly associated with one another. Pain impact was associated with age, education, employment, time since last pain attack, hydroxyurea use, opioid use, sleep impact, social functioning, and cognitive function (F = 88.74, P < .0001). Sleep impact was associated with household income, opioid use, pain impact, social functioning, depressive symptoms, and tiredness (F = 101.40, P < .0001). Social functioning was associated with employment, pain attacks in the past year, autoimmune/inflammatory comorbidities, pain impact, sleep impact, depressive symptoms, tiredness, and cognitive function (F = 121.73, P < .0001). Depressive symptoms were associated with sex, sleep impact, social functioning, tiredness, and cognitive function (F = 239.51, P < .0001). Tiredness was associated with sex, education, sleep impact, social functioning, depressive symptoms, and cognitive function (F = 129.13, P < .0001). These findings reflect the baseline PRO assessments among SCDIC registry participants. Further research is needed to better understand these outcomes and new targets for interventions to improve quality of life and function in people with SCD.
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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.