scholarly journals Topical Review: Eosinophilic Esophagitis in Children: Implications for Health-Related Quality of Life and Potential Avenues for Future Research: Figure 1.

2015 ◽  
Vol 40 (8) ◽  
pp. 727-732 ◽  
Author(s):  
Mary K. Lynch ◽  
Kristin T. Avis ◽  
Reed A. Dimmitt ◽  
Burel R. Goodin
Author(s):  
Marina M. Schoemaker ◽  
Suzanne Houwen

Abstract Purpose of Review (1) To give an overview of what is currently known about health-related quality of life (HRQoL) in three common and co-occurring developmental disorders: attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASD), and developmental coordination disorder (DCD), and (2) to provide directions for future research. Recent Findings HRQoL is compromised in all three developmental disorders, affecting various domains of HRQoL. However, some domains are more affected than others depending on the nature of the core deficits of the disorder. Overall, parents’ rate HRQoL of their children lower than the children themselves. Children with ASD and ADHD with co-occurring disorders have lower HRQoL compared to those with singular disorders. Future studies in DCD are needed to investigate the effect of co-occurring disorder in this population. Summary Children with developmental disorders have lower HRQoL than typically developing children. Future research should focus on the effects of co-occurring disorders on HRQoL and on protective factors that may increase HRQoL. HRQoL should be a part of clinical assessment, as it reveals the areas in life children are struggling with that could be targeted during intervention.


2018 ◽  
Vol 34 (5) ◽  
pp. 498-506 ◽  
Author(s):  
Olina Efthymiadou ◽  
Jean Mossman ◽  
Panos Kanavos

Objectives:Health-related quality of life (HRQoL) data generated by generic, preference-based instruments (i.e., EQ-5D) are highly demanded in health policy decision making, because they allow for direct comparisons of HRQoL outcomes between disease areas. We aimed to quantify HRQoL outcomes in breast cancer (BC), rheumatoid arthritis (RA), multiple sclerosis (MS), rare cancers (RC), and rare disease (RD) patients and understand the patterns that differentiate HRQoL outcomes between these disease areas, and more specifically between rare and more common disease population groups.Methods:An international, Web survey of patients measured HRQoL (EQ-5D-5L), self-perceived health (EQ-5D-5L Visual Analogue Scale), and additional QoL dimensions, such as patient disability level.Results:We received 675 completed responses. Average utility loss was 53.5 percent, 32.5 percent, and 33.3 percent for RD, RA, and MS patients, respectively, in contrast to 18.6 percent for BC and RC patients. Statistically significant differences (p < .05) were observed between disease groups in all EQ-5D-5L domain outcomes, apart from that of “Anxiety/Depression.” Severe and/or extreme problems were reported in performing usual activities for RD and RC (34 percent and 13 percent of overall problems reported respectively), mobility for MS (18 percent), pain/discomfort for RA (13 percent), and anxiety/depression for BC (7 percent) patients.Conclusions:We demonstrated significant differences in the dimensions that drive HRQoL outcomes between rare and more common diseases and showcased that the same EQ-5D utility may reflect very different severities depending on the patient population under investigation. Future research should examine whether outcomes in other, critical HRQoL domains not included in generic measures also highlight significant differences across disease areas.


2017 ◽  
Vol 158 (35) ◽  
pp. 1363-1372
Author(s):  
Zsombor Zrubka

Abstract: Informal care is non-financed care outside the realm of formal healthcare, which represents an increasing challenge for aging societies. Informal care has frequently been neglected in health economic analyses, while in recent years its coverage has increased considerably in the international scientific literature. This review summarizes the methodology of the health-economic assessment of informal care, including the objective and subjective metrics of caregiver burden, its financial and non-financial valuation and practical applications, with special emphasis on the introduction of care-related quality of life instruments (e.g. Care Related Quality of Life – CarerQoL instrument). Care-related quality of life is a different entity from health-related quality of life, the two cannot be combined, so their joint evaluation requires multi-criteria decision analysis methods. Therefore, it is important to determine the societal preferences of care-related quality of life versus health-related quality of life, and map the relationship of care-related quality of life with time. The local validation of tools measuring care-related quality of life, its more widespread practical application and the analysis of its effect on decision making are also important part of the future research agenda. Orv Hetil. 2017; 158(35): 1363–1372.


2017 ◽  
Vol 43 (4) ◽  
pp. 464-471 ◽  
Author(s):  
Mary K Lynch ◽  
Margaux J Barnes ◽  
Reed A Dimmitt ◽  
Lisa Martin ◽  
Marc E Rothenberg ◽  
...  

2015 ◽  
Vol 272 (12) ◽  
pp. 3833-3839 ◽  
Author(s):  
Helen Larsson ◽  
Karin Bergman ◽  
Caterina Finizia ◽  
Leif Johansson ◽  
Mogens Bove ◽  
...  

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