Aoife Callan

Patient‐reported outcomes in multiple sclerosis: a systematic comparison of available measures

Multiple patient‐reported outcomes (PROs) are currently being used in multiple sclerosis (MS) but their application is inconsistent and guidance on the appropriateness of each tool is lacking. The objective of our study was to identify MS‐specific PROs and systematically to assess the development process and the reliability and validity of various instruments. A systematic literature search was conducted on multiple data sources, including MEDLINE, Embase (using the Ovid platform) and Google Scholar, from 1996 to March 2015. Search terms included combinations of MS, PROs and quality of life. Randomized controlled trials or observational studies conducted on patients with MS and published in English were included. In addition, the PROQOLID database was explored. The MS‐specific PROs were systematically assessed using the Evaluating the Measurement of Patient‐Reported Outcomes tool. In total, 8094 articles were screened and 405 PROs were identified from 1102 relevant articles. PROs were classified into MS‐specific (n = 82) and non‐MS‐specific (n = 323). The results for the eight PROs that are most commonly used in MS clinical trials are presented here. For these eight PROs, the overall summary scores ranged between 50.1 and 68.7. The Multiple Sclerosis Impact Scale‐29 had the best overall mean score (68.7), followed by the Leeds Multiple Sclerosis Quality of Life (67.0). This is the first study to provide a standardized assessment of all PROs for MS. There is a lack of data on content validity for PROs used in MS research, which indicates the need for a robust instrument in MS developed according to the US Food and Drug Administration guidelines.

A Systematic Review and Meta-Analysis of Prevalence Studies of Sporadic Inclusion Body Myositis

BACKGROUND Sporadic Inclusion Body Myositis (sIBM) is a rare and slowly progressive debilitating muscle disease with symptoms generally developing≥50 years of age. OBJECTIVE To conduct a systematic review and meta-analysis of the prevalence of sIBM literature, including a methodological quality assessment of the selected papers. METHODS A systematic search of Medline, Embase, Cochrane Database of Systematic Reviews and major Myositis and Neurological conferences was conducted. Articles reporting prevalence and published in English up to March 2017 were assessed for methodology quality using the Loney quality assessment, Downs & Black score, and the Methodological Evaluation of Observational Research checklists. Meta-analyses using random effects were completed on both general population and≥50 years prevalence estimates. RESULTS 315 articles were retrieved and data were extracted from 10 relevant studies. One study was subsequently excluded due to methodological issues. The meta-prevalence estimate from 9 papers was 24.8/1,000,000 (95% CI: 20.0-29.6). The methodological quality results were consistent across assessment tools with four articles scoring 4 or 5 out of 8 in the Loney assessment. The meta-prevalence of these four articles was 45.6/ 1,000,000 (95% CI: 35.9-55.2). CONCLUSION There was high variability in reported sIBM prevalence estimates and the quality of the studies conducted. Existing evidence suggests an increase of prevalence estimates over time, which may be explained by growing disease awareness, improvements in diagnostic criteria and study methodologies. Further high quality studies are needed to understand if prevalence varies across geographies or ethnicities.

Burden of Illness and Healthcare Resource Use in US Patients with sporadic Inclusion Body Myositis

We analyzed the burden of illness of sporadic inclusion body myositis (sIBM) patients and the costs to the healthcare system.

Burden of illness and healthcare resource use in United States patients with sporadic inclusion body myositis: Economic Burden of sIBM Patients in the United States

We analyzed the burden of illness of sporadic inclusion body myositis (sIBM) patients and the costs to the healthcare system.

Burden of illness and healthcare resource use in United States patients with sporadic inclusion body myositis

We analyzed the burden of illness of sporadic inclusion body myositis (sIBM) patients and the costs to the healthcare system.

Erosion of pension rights: Experiences of older women in Ireland

The recent economic crisis of 2008 and the fragility of government revenues sharply illuminated the contested nature of pension rights in Europe. The crisis intensified calls for an overhaul of pen...