The use of health-related quality of life scales as outcome measures in clinical trials is increasing. Although such measures have been validated in adults with Friedreich ataxia, they have not been studied in children with this disorder. The health-related quality of life of children with Friedreich ataxia was assessed using the PedsQL 4.0 Generic Core Module and Multidimensional Fatigue Scale. The scores from the Friedreich ataxia cohort were compared to those of control groups (children without a chronic disease). Minimal missing responses support the feasibility of using the PedsQL 4.0 in the Friedreich ataxia population. The scales demonstrated internal consistency, and concordance was observed between child and proxy scores. Children with Friedreich ataxia and their proxies reported lower health-related quality of life than did controls in the Core and Fatigue scales. A modest relationship was seen between markers of disease status and health-related quality of life, providing support for the idea that children with Friedreich ataxia have a lower health-related quality of life than those without a chronic disease. Additional studies are needed to examine the relationship between health-related quality of life and disease markers and to further establish the validity of the PedsQL 4.0 in this population.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1016/j.pediatrneurol.2010.01.002 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Protocol for the MERINO study: A randomized placebo-controlled trial assessing the efficacy, safety, and cost-effectiveness of methotrexate in people with erosive hand osteoarthritis.
Osteoarthr Cartil Open
March 2025
Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Oslo, Norway.
Objective: Previous studies on the efficacy of methotrexate in people with hand osteoarthritis (OA) have shown conflicting results. The MERINO trial aims to investigate the efficacy and safety of methotrexate in people with painful inflammatory erosive hand OA.
Design: In total 163 participants with erosive hand OA, synovitis by ultrasound, and finger joint pain of 40-80 mm on a visual analogue scale (VAS) will be recruited from a rheumatology outpatient clinic.
Development and validation of a pragmatic measure of cocreation in research engagement: a study protocol.
BMJ Open
December 2024
Department of Global Health, University of Washington, Seattle, Washington, USA.
Introduction: Cocreation, a collaborative process of key interested partners working alongside researchers, is fundamental to community-engaged research. However, the field of community-engaged research is currently grappling with a significant gap: the lack of a pragmatic and validated measure to assess the quality of this process. This protocol addresses this significant gap by developing and testing a pragmatic cocreation measure with diverse community and research partners involved in participatory health-related research.
View Article and Find Full Text PDFWorkplace and social support, treatment satisfaction, and their impact on quality of life in Swedish women with multiple sclerosis: a cross-sectional survey study.
BMJ Open
December 2024
Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, SE-171 77, Stockholm, Sweden.
Objective: To evaluate health-related quality of life (HRQoL), in relation to support from work, social, as well as treatment satisfaction, in women with multiple sclerosis (MS). Further, to predict the satisfaction on these support dimensions based on sociodemographic and clinical variables.
Design: Cross-sectional survey: a web-based questionnaire conducted in 2021 of people with MS (PwMS) linked to Nationwide Swedish registers.
Strengthening research preparedness for crises: lessons from Norwegian government agencies in using randomized trials and quasi-experimental methods to evaluate public policy interventions.
Health Res Policy Syst
January 2025
Centre for Epidemic Interventions Research, Norwegian Institute of Public Health, Oslo, Norway.
During public health crises such as pandemics, governments must rapidly adopt and implement wide-reaching policies and programs ("public policy interventions"). A key takeaway from the coronavirus disease 2019 (COVID-19) pandemic was that although numerous randomized controlled trials (RCTs) focussed on drugs and vaccines, few policy experiments were conducted to evaluate effects of public policy interventions across various sectors on viral transmission and other consequences. Moreover, many quasi-experimental studies were of spurious quality, thus proving unhelpful for informing public policy.
View Article and Find Full Text PDFWant 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!