ArticleBlood advances2020
Assessment of health-related quality of life among adults hospitalized with sickle cell disease vaso-occlusive crisis.
Article in Blood advances, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
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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.
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Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it, 31 citations in OpenAlex.
- Health State Utilities for Sickle Cell Disease: A Catalog Prepared From a Systematic Review.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2022Pooled it
- Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.Frontiers in pediatrics · 2022Pooled it
- Improvements in health-related quality of life in patients with severe sickle cell disease after exagamglogene autotemcel.Blood advances · 2025Trial
- Consistency of ASCQ-Me Scores Across Repeated Measures in Sickle Cell Disease.Western journal of nursing research · 2026Observational
- Evaluation of hydroxyurea effect in patients with sickle cell disease: A prospective observational study.Indian journal of pharmacology · 2026Observational
- The SickleFit Tele-Exercise Program for older adults with sickle cell disease: feasibility, acceptability, safety study.Blood red cells & iron · 2026Article
- Psychometric evaluation of Patient-Reported Outcomes Measurement Information System (PROMIS) in pediatric sickle cell disease in Europe.European journal of pediatrics · 2026Article
- Article
- Clinical, laboratory, radiological features, and outcome of acute fat embolism syndrome in sickle cell disease.Scientific reports · 2025Article
- 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
- 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
- Unmet Need: Mechanistic and Translational Studies of Sickle Cell Disease Pain as a Whole-Person Health Challenge.The journal of pain · 2024Review
- 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
- Sense of coherence or self-efficacy as predictors of health-related quality of life in sickle cell disease patients.Annals of hematology · 2023Article
- Allogeneic hematopoietic stem cell transplantation to cure sickle cell disease: A review.Frontiers in medicine · 2023Review
- 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
- Microfluidic methods to advance mechanistic understanding and translational research in sickle cell disease.Translational research : the journal of laboratory and clinical medicine · 2022Review
- Correction of murine sickle cell disease by allogeneic haematopoietic cell transplantation with anti-3rd party veto cells.Bone marrow transplantation · 2021Article
- Patterns of healthcare utilization among patients with sickle cell disease hospitalized with pain crises.EJHaem · 2020Article
- Article
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
Sickle cell disease (SCD) is characterized by painful vaso-occlusive crises (VOCs). Self-reported pain intensity is often assessed with the Numeric Rating Scale (NRS), whereas newer patient-reported outcome measures (PROMs) assess multidimensional pain in SCD. We describe pain experiences among hospitalized adults with VOCs, using 2 PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). Adults with SCD hospitalized with VOCs at 2 academic centers in Boston, Massachusetts, from April 2016 to October 2017 were eligible. Participants completed the NRS and PROMs at admission and 7 days postdischarge. PROM scores were described and compared with population norms. Length of stay (LOS) and 30-day readmission rates were assessed. Forty-two (96%) of 44 eligible patients consented and completed admission assessments. Mean age was 30.2 years (standard deviation, 9.1), 60% were women, 76% were non-Hispanic black, and 64% had hemoglobin SS. Twenty-seven participants (64%) completed postdischarge assessments. Sixty percent had ≥4 VOCs in the last year. Nearly all PROMIS Global Health and ASCQ-Me scores were worse than population norms. NRS and PROMIS Global Physical Health scores improved after discharge, the latter driven principally by improvements in pain. Overall median LOS was 7 days, and 30-day readmission rate was 40.5%. Administration of PROMs among adults with SCD hospitalized for VOCs is feasible and demonstrates participants experienced recurrent, prolonged, and severe VOCs. PROMIS Global and ASCQ-Me scores indicated substantial suffering, and the striking 30-day readmission rate highlights the vulnerability of these patients.
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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.