ArticleMedicine2016
Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care.
Article in Medicine, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 1 of them a synthesis 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
28 citing papers in PubMed, 1 synthesis or guideline pooled it, 51 citations in OpenAlex.
- Systematic literature review and assessment of patient-reported outcome instruments in sickle cell disease.Health and quality of life outcomes · 2018Pooled it
- Impact of an individualized pain plan to treat sickle cell disease vaso-occlusive episodes in the emergency department.Blood advances · 2024Trial
- Bone marrow transplantation for adolescents and young adults with sickle cell disease: Results of a prospective multicenter pilot study.American journal of hematology · 2019Trial
- Process-related determinants of quality of care for individuals with sickle cell disease in a tertiary facility in Ghana.BMJ open · 2026Article
- Health Equity Concerns in People with Sickle Cell Disease and Recurrent Vaso-Occlusive Crises: Results from an International Survey Study.Drugs - real world outcomes · 2026Article
- Clinical, humanistic, and economic burden of sickle cell disease in The Jazan Region, Saudi Arabia.PloS one · 2026Observational
- Clinical Outcomes Among Patients With Sickle Cell Disease and Transfusion-Dependent Beta-Thalassemia Treated With Allogeneic Hematopoietic Stem Cell Transplantation: A Systematic Literature Review.Journal of blood medicine · 2025Review
- Society for Maternal-Fetal Medicine Consult Series #68: Sickle cell disease in pregnancy.American journal of obstetrics and gynecology · 2024Article
- What interval of daily pain assessment is required to reliably diagnose chronic pain in SCD? The Pain in Sickle Cell Epidemiology Study.Journal of sickle cell disease · 2024Article
- Effects of Experienced Discrimination in Pediatric Sickle Cell Disease: Caregiver and Provider Perspectives.Journal of racial and ethnic health disparities · 2023Article
- "The project did not come to us with a solution": Perspectives of research teams on implementing a study about electronic health record-embedded individualized pain plans for emergency department treatment of vaso-occlusive episodes in adults with sickle cell disease.BMC health services research · 2023Article
- Economic and Clinical Burden of Managing Sickle Cell Disease with Recurrent Vaso-Occlusive Crises in the United States.Advances in therapy · 2023Article
- Sickle cell disease and adolescents' perspectives on self-care management resources.Health care transitions · 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
- Article
- Moving Toward a Multimodal Analgesic Regimen for Acute Sickle Cell Pain with Non-Opioid Analgesic Adjuncts: A Narrative Review.Journal of pain research · 2022Review
- Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain.PloS one · 2022Article
- Article
- Electronic Health Record-Embedded Individualized Pain Plans for Emergency Department Treatment of Vaso-occlusive Episodes in Adults With Sickle Cell Disease: Protocol for a Preimplementation and Postimplementation Study.JMIR research protocols · 2021Article
- Trial design of comparing patient-specific versus weight-based protocols to treat vaso-occlusive episodes in sickle cell disease (COMPARE-VOE).Contemporary clinical trials · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Documented deficiencies in adult sickle cell disease (SCD) care include poor access to knowledgeable providers and inadequate treatment in emergency departments (EDs).The aim of this study was to create patient-reported outcome measures of the quality of ambulatory and ED care for adults with SCD.We developed and pilot tested SCD quality of care questions consistent with Consumer Assessments of Healthcare Providers and Systems surveys. We applied psychometric methods to develop scores and evaluate reliability and validity.The participants of this study were adults with SCD (n = 556)-63% aged 18 to 34 years; 64% female; 64% SCD-SS-at 7 US sites.The measure used was Adult Sickle Cell Quality of Life Measurement information system Quality of Care survey.Most participants (90%) reported at least 1 severe pain episode (pain intensity 7.8 ± 2.3, 0-10 scale) in the past year. Most (81%) chose to manage pain at home rather than the ED, citing negative ED experiences (83%). Using factor analysis, we identified Access, Provider Interaction, and ED Care composites with reliable scores (Cronbach α 0.70-0.83) and construct validity (r = 0.32-0.83 correlations with global care ratings). Compared to general adult Consumer Assessments of Healthcare Providers and Systems scores, adults with SCD had worse care, adjusted for age, education, and general health.Results were consistent with other research reflecting deficiencies in ED care for adults with SCD. The Adult Sickle Cell Quality of Life Measurement Quality of Care measure is a useful self-report measure for documenting and tracking disparities in quality of SCD care.
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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.