SynthesisOrphanet journal of rare diseases2025
Measurement of fatigue in sickle cell disease: a systematic review of fatigue measures.
Synthesis in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
backgroundSickle cell disease (SCD) is a chronic inherited blood disorder caused by abnormal haemoglobin production, affecting over seven million people worldwide. Although pain-particularly acute bone pain-is the hallmark symptom of this disease, fatigue is also a commonly observed manifestation. Fatigue is a debilitating symptom in Sickle Cell Disease (SCD) that significantly impacts quality of life. Accurate assessment of fatigue is crucial for effective disease management. However, a comprehensive analysis of fatigue assessment tools in SCD research is lacking.
objectiveThis systematic literature review aims to identify and evaluate self-reported psychometric measures of fatigue used in SCD research with children, adolescents, young adults and adults.
methodsA systematic search was conducted across six databases from 2010 to March 2024. The main inclusion criteria included peer-reviewed journal articles, patients with all SCD genotypes, studies evaluating fatigue using a self-reported psychometric measure, and studies published in English or French. The PRISMA guidelines were followed for study selection and data extraction.
resultsTwenty-eight studies met the inclusion criteria, reporting on 16 psychometric measures of fatigue. The most frequently used tool was the PROMIS system. Nine dimensions of fatigue were identified, including general, physical, mental, cognitive, emotional fatigue, and its impact on motivation, activity, vigour, and sleep/rest. However, the definitions of these dimensions were often unclear. Reported fatigue scores are not directly comparable due to methodological issues and variability in the assessment used. These methodological issues limit our knowledge on the prevalence of fatigue in SCD.
conclusionThe lack of a standardised fatigue assessment tool in SCD research hinders direct comparison of fatigue scores across studies. Future research should prioritise the development of a tailored assessment tool for SCD, considering the specific dimensions of fatigue relevant to this population. In the interim, clinicians and researchers can employ a combination of multidimensional and unidimensional tools to gain a more comprehensive understanding of patients' fatigue experiences.
Indexed as
Identifiers
What OpenQuestion holds
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.