Background: Sickle cell disease (SCD) is an inherited chronic disease that is characterized by complications such as recurrent painful vaso-occlusive events that require frequent hospitalizations and contribute to early mortality. The objective of the study was to report on the initial measurement properties of the new PedsQL™ SCD Module for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years.

Procedure: The 43-item PedsQL™ SCD Module was completed in a multisite study by 243 pediatric patients with SCD and 313 parents. Participants also completed the PedsQL™ 4.0 Generic Core Scales and PedsQL™ Multidimensional Fatigue Scale.

Results: The PedsQL™ SCD Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.95; parent proxy-report α = 0.97), and good reliability for the nine individual scales (patient self-report α = 0.69-0.90; parent proxy-report α = 0.83-0.97). Intercorrelations with the PedsQL™ Generic Core Scales and PedsQL™ Multidimensional Fatigue Scales were medium (0.30) to large (0.50) range, supporting construct validity. PedsQL™ SCD Module Scale Scores were generally worse for patients with severe versus mild disease. Confirmatory factor analysis demonstrated an acceptable to excellent model fit.

Conclusions: The PedsQL™ SCD Module demonstrated acceptable measurement properties. The PedsQL™ SCD Module may be utilized in the evaluation of SCD-specific health-related quality of life in clinical research and practice. In conjunction with the PedsQL™ Generic Core Scales and the PedsQL™ Multidimensional Fatigue Scale, the PedsQL™ SCD Module will facilitate the understanding of the health and well-being of children with SCD.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4412167PMC
http://dx.doi.org/10.1002/pbc.24491DOI Listing

Publication Analysis

Top Keywords

pedsql™ scd
28
scd module
28
pedsql™
14
patient self-report
12
parent proxy-report
12
pedsql™ generic
12
generic core
12
core scales
12
scales pedsql™
12
pedsql™ multidimensional
12

Similar Publications

Association of objective subtle cognitive difficulties with amyloid-β and tau deposition compared to subjective cognitive decline.

Eur J Nucl Med Mol Imaging

January 2025

Department of Nuclear Medicine & PET Center, Huashan Hospital, Fudan University, Shanghai, China.

Purpose: This study evaluated the differences in amyloid-β (Aβ), tau deposition, and longitudinal tau deposition between subjective cognitive decline (SCD) and objective subtle cognitive difficulties (Obj-SCD).

Methods: Participants from the Alzheimer's Disease Neuroimaging Initiative (ADNI) cohort (n = 234) and the Huashan cohort (n = 267) included individuals with Obj-SCD, SCD, subjective memory concern (SMC), and healthy controls (HC). General linear models (GLM) were used to compare baseline and longitudinal differences in Aβ and tau among the groups, and to examine the associations between these biomarkers.

View Article and Find Full Text PDF

Sickle cell disease (SCD) and thalassemia are the most common hereditary disorders encountered in Central India. Timely identification of these disorders is critical to reduction in severe clinical manifestations and for identifying disease burden. Present study reports spectrum of hemoglobinopathies among the referred anemia patients to single centre in central India.

View Article and Find Full Text PDF

Unlabelled: The heterogeneity in clinical presentations in sickle cell disease (SCD) alters between crisis and steady state phases. Considering the pathophysiology, it is crucial to establish a disease-specific reference interval for hematological and biochemical parameters and identify the sensitive predictive markers for crisis. The case-control study included fifty-four healthy control, forty SCD cases in crisis state, and forty-six steady state cases.

View Article and Find Full Text PDF

Background: Subjective cognitive decline (SCD) is the early predementia syndrome. that occurs even before the development of objective cognitive decline. SCD plus refers to an additional set of criteria that increases the likelihood of developing mild cognitive impairment and further progressing to Alzheimer's disease (AD).

View Article and Find Full Text PDF

Background: Dementia is a growing public health issue. Non-drug interventions targeting individuals before the onset of overt cognitive decline may be effective. Subjective cognitive decline (SCD) is present in > 50% of older adults and associated with progression to dementia.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!