ArticlePediatric blood & cancer2016
Initial Evaluation of the Pediatric PROMIS® Health Domains in Children and Adolescents With Sickle Cell Disease.
Article in Pediatric blood & cancer, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 49 papers, 4 of them syntheses that pooled it.
What it found
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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
49 citing papers in PubMed, 4 syntheses or guidelines pooled it, 93 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
- Systematic Review: Pain and Emotional Functioning in Pediatric Sickle Cell Disease.Journal of clinical psychology in medical settings · 2020Pooled it
- Systematic literature review and assessment of patient-reported outcome instruments in sickle cell disease.Health and quality of life outcomes · 2018Pooled it
- Arginine Therapy for Pain in Sickle Cell Disease: A Phase-2 Randomized, Placebo-Controlled Trial.American journal of hematology · 2025Trial
- Trial
- Baseline characteristics of Ghanaian children and adults enrolled in PIVOT, a randomised clinical trial of hydroxyurea in HbSC disease in sub-Saharan Africa.British journal of haematology · 2024Trial
- A multilevel mHealth intervention boosts adherence to hydroxyurea in individuals with sickle cell disease.Blood advances · 2023Trial
- Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures as Clinical Trial Endpoints: Experience from a Multicenter Pragmatic Trial in Children with Crohn's Disease.The Journal of pediatrics · 2022Trial
- Patient-Reported Outcomes from a Randomized, Active-Controlled, Open-Label, Phase 3 Trial of Burosumab Versus Conventional Therapy in Children with X-Linked Hypophosphatemia.Calcified tissue international · 2021Trial
- Vitamin D Supplementation Improves Health-Related Quality of Life and Physical Performance in Children with Sickle Cell Disease and in Healthy Children.Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & PractitionersTrial
- Psychometric evaluation of Patient-Reported Outcomes Measurement Information System (PROMIS) in pediatric sickle cell disease in Europe.European journal of pediatrics · 2026Article
- Article
- PROMIS displays strong construct validity in pediatric and adult patients with idiopathic inflammatory myopathies.Rheumatology (Oxford, England) · 2026Article
- Emergency care for children with sickle cell disease: a focus on pain and fever.Expert review of hematology · 2025Review
- A pilot randomized controlled trial of the iPeer2Peer program in adolescents with sickle cell disease: A mixed method study.Journal of clinical and translational science · 2025Article
- PROMIS fatigue scores are moderately correlated with heart failure severity in pediatrics.JHLT open · 2024Article
- Patient-reported outcomes in children with sickle cell disease at presentation for an acute pain episode.Blood advances · 2023Article
- Are children with sickle cell disease at particular risk from the harmful effects of air pollution? Evidence from a large, urban/peri-urban cohort.Pediatric blood & cancer · 2023Article
- Comparison of CAT and short forms for PROMIS pain and physical health domains in children with sickle cell disease.Journal of patient-reported outcomes · 2023Article
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Authors and funding
7 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundThe Patient Reported Outcomes Measurement Information System (PROMIS®) has developed pediatric self-report scales measuring several unidimensional health attributes (domains) suitable for use in clinical research, but these measures have not yet been validated in sickle cell disease (SCD). PROCEDURE: A convenience sample of SCD children, aged 8-17 years, from two sickle cell programs was recruited at routine clinic visits, including some for hydroxyurea monitoring or monthly transfusions. Children completed PROMIS pediatric items using an online data collection platform, the PROMIS Assessment Center Web site.
resultsA total of 235 participants (mean age 12.5 ± 2.8 years, 49.8% female) participated in the study. Adolescents (ages 12-17 years) reported significantly higher pain interference and depressive symptoms, and worse lower extremity physical functioning domain scores compared to younger children (ages 8-11 years). Female participants reported significantly higher pain interference, fatigue, and depressive symptoms, and worse lower extremity physical functioning domain scores compared with their male counterparts. Participants with hip or joint problems that limited usual activities reported significantly higher pain, fatigue, and depressive symptoms scores, and worse upper/lower extremity physical functioning scores as did participants who had experienced sickle pain in the previous 7 days.
conclusionsPROMIS pediatric measures are feasible in a research setting and identify expected differences in known group comparisons in a sample of SCD children. The large domain score differences between those with or without SCD-related complications suggest the potential usefulness of these measures in clinical research, but further validation studies are needed, particularly in clinical practice settings.
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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.